CLINICAL REPORT

The Individuals With DisabilitiesEducation Act (IDEA) for ChildrenWith Special Educational NeedsPaul H Lipkin MD FAAP Jeffrey Okamoto MD FAAP the COUNCIL ON CHILDREN WITH DISABILITIES and COUNCIL ON SCHOOLHEALTH

abstract The pediatric health care provider has a critical role in supporting the healthand well-being of children and adolescents in all settings including earlyintervention (EI) preschool and school environments It is estimated that 15of children in the United States have a disability The Individuals withDisabilities Education Act entitles every affected child in the United States frominfancy to young adulthood to a free appropriate public education through EIand special education services These services bolster development andlearning of children with various disabilities This clinical report providesthe pediatric health care provider with a summary of key components of themost recent version of this law Guidance is also provided to ensure thatevery child in need receives the EI and special education services to whichhe or she is entitled

Pediatric health care providers play a key role as advocates promoting thewell-being of all children in the educational setting as well as in healthcare Children with disabilities currently estimated as 15 of USchildren1 have been entitled to a free appropriate public education(FAPE) since 1975 when the US Congress mandated public specialeducational services for those with special needs through the Educationfor All Handicapped Children Act later renamed the Individuals withDisabilities Education Act (IDEA)2 IDEA has undergone severalreauthorizations and amendments by Congress since its initial adoptionmost recently in 2004 This clinical report will review the historic andlegal background of this entitlement and will explore the role of thepediatric health care provider in supporting special education services forchildren in need It is complemented by other American Academy ofPediatrics (AAP) reports and policy statements addressing related issuesin early intervention (EI) and school health3ndash8

This document is copyrighted and is property of the AmericanAcademy of Pediatrics and its Board of Directors All authors have filedconflict of interest statements with the American Academy ofPediatrics Any conflicts have been resolved through a processapproved by the Board of Directors The American Academy ofPediatrics has neither solicited nor accepted any commercialinvolvement in the development of the content of this publication

Clinical reports from the American Academy of Pediatrics benefit fromexpertise and resources of liaisons and internal (AAP) and externalreviewers However clinical reports from the American Academy ofPediatrics may not reflect the views of the liaisons or theorganizations or government agencies that they represent

The guidance in this report does not indicate an exclusive course oftreatment or serve as a standard of medical care Variations takinginto account individual circumstances may be appropriate

All clinical reports from the American Academy of Pediatricsautomatically expire 5 years after publication unless reaffirmedrevised or retired at or before that time

wwwpediatricsorgcgidoi101542peds2015-3409

DOI 101542peds2015-3409

PEDIATRICS (ISSN Numbers Print 0031-4005 Online 1098-4275)

Copyright copy 2015 by the American Academy of Pediatrics

FINANCIAL DISCLOSURE The authors have indicated they do not have afinancial relationship relevant to this article to disclose

FUNDING No external funding

POTENTIAL CONFLICT OF INTEREST The authors have indicated theyhave no potential conflicts of interest to disclose

FROM THE AMERICAN ACADEMY OF PEDIATRICS PEDIATRICS Volume 136 number 6 December 2015 by guest on September 9 2021wwwaappublicationsorgnewsDownloaded from

FEDERAL LEGISLATION AFFECTINGEDUCATION FOR CHILDREN WITHDISABILITIES

Congress passed IDEA in 1975 inresponse to public belief in the long-term benefit of educating childrenwith disabilities growing concernthat states were not providing anadequate public education to thesechildren and a series of legalchallenges At the same time statessought the assistance of the federalgovernment to fund public educationservices for children withdisabilities910 IDEA authorizesfederal funding to states for EIservices for infants and toddlers withdisabilities and developmental delays(part C) and special education andrelated services for school-agedchildren with disabilities (part B) andrelates principles for providing suchservices

IDEA has several key requirements10

as follows

1 Free appropriate public educationStates and local school districtsmust offer FAPE to all childrenwith disabilities between the agesof 3 and 21 years inclusive

2 Identification and evaluationStates and school districts mustidentify locate and evaluate allchildren with disabilitieswithout regard to the severity oftheir disability to determine theireligibility and need for special ed-ucation and related services Thisrequirement is referred to asldquochild findrdquo and the principle isknown as ldquozero rejectrdquo meaningthat no child can be denied aneducation

3 Individualized education pro-gram Each child with a disabilitywho is deemed eligible willreceive an individualized educa-tion program (IEP) describing hisor her specific educational andservice needs with parent partici-pation on the IEP team In-dividualized family service plans(IFSPs) are used for infants andtoddlers

4 Least restrictive environmentChildren with disabilities must beeducated with children withoutdisabilities ldquoto the maximum ex-tent possiblerdquo in the least re-strictive environment (LRE)

5 Due process safeguards Proceduralsafeguards must be put in placefor children and their familiesincluding the right to mediationrequest for complaint investigationandor a due process hearing theright to appeal to a federal districtcourt and if they prevail theright to receive attorneysrsquo fees

6 Parent and student participationand shared decision-makingSchools must collaborate withparents and students with dis-abilities in the design and imple-mentation of special educationservices The parentsrsquo (and when-ever appropriate the studentrsquos)input and wishes must be consid-ered in IEP goals and objectivesrelated-service needs and place-ment decisions

Although IDEA is a federal lawoverseen by the US Department ofEducation its requirements pertainonly to states receiving related fundsHowever at the present time allstates and territories accept federalIDEA funds The statute also allowsstate flexibility and discretion formany of its components

IDEArsquos provisions are separated into4 distinct parts part A consists of itsgeneral provisions part B authorizesthe state grants for services topreschool-aged (3ndash5 years) andschool-aged children (ages 6ndash21years inclusive) with disabilities(Table 1) part C authorizes servicesfor programs of EI for infants andtoddlers (children younger than 3years) and their families and part Dfocuses on personnel improvementwith awards to states for reformingand improving their systems forpersonnel preparation andprofessional development in EIeducational and transition servicesand funding for at least 1 parent

training and information center(wwwparentcenterhuborg) in everystate to provide information trainingand assistance to families of infantstoddlers children and youth withdisabilities

Two other federal laws have roles inensuring the educational rights ofchildren with disabilities AlthoughIDEA serves as both a civil rightsstatute for children with disabilitiesas well as a funding statute centeredon their education section 504 of theRehabilitation Act of 197311 and theAmericans with Disabilities Act (ADA)of 1990 (as amended by the ADAAmendments Act in 2008)12 addresscivil rights broadly prohibitingdiscrimination against any individualwith disabilities and do not provideany federal funds to assist withimplementation Section 504specifically prohibits discriminationagainst a person of any age with adisability in any federally fundedprogram or activity Althoughchildhood education falls within itspurview section 504 includes alllevels of education including collegesand universities which are notcovered under IDEA In its regulationssection 504 requires the provision ofan FAPE in the LRE for all childrenwith disabilities attending publicschools but the regulations onlyrequire reasonable accommodationsfor younger children in child caresettings older youth in college or forother public accommodations Inaddition section 504 extends to anyprivate school that accepts any federalfunds The ADA also prohibitsdiscrimination against individualswith disabilities of all ages and in allareas including employment publicservices and public accommodationssuch as schools It covers all areasof public life and not just thosereceiving federal funding

Although these laws overlap they havedifferent working definitions ofdisability IDEA uses a categoricaldefinition of a child with a disabilityspecifying an eligible child as having an

PEDIATRICS Volume 136 number 6 December 2015 e1651 by guest on September 9 2021wwwaappublicationsorgnewsDownloaded from

FEDERAL LEGISLATION AFFECTINGEDUCATION FOR CHILDREN WITHDISABILITIES

Congress passed IDEA in 1975 inresponse to public belief in the long-term benefit of educating childrenwith disabilities growing concernthat states were not providing anadequate public education to thesechildren and a series of legalchallenges At the same time statessought the assistance of the federalgovernment to fund public educationservices for children withdisabilities910 IDEA authorizesfederal funding to states for EIservices for infants and toddlers withdisabilities and developmental delays(part C) and special education andrelated services for school-agedchildren with disabilities (part B) andrelates principles for providing suchservices

IDEA has several key requirements10

as follows

1 Free appropriate public educationStates and local school districtsmust offer FAPE to all childrenwith disabilities between the agesof 3 and 21 years inclusive

2 Identification and evaluationStates and school districts mustidentify locate and evaluate allchildren with disabilitieswithout regard to the severity oftheir disability to determine theireligibility and need for special ed-ucation and related services Thisrequirement is referred to asldquochild findrdquo and the principle isknown as ldquozero rejectrdquo meaningthat no child can be denied aneducation

3 Individualized education pro-gram Each child with a disabilitywho is deemed eligible willreceive an individualized educa-tion program (IEP) describing hisor her specific educational andservice needs with parent partici-pation on the IEP team In-dividualized family service plans(IFSPs) are used for infants andtoddlers

4 Least restrictive environmentChildren with disabilities must beeducated with children withoutdisabilities ldquoto the maximum ex-tent possiblerdquo in the least re-strictive environment (LRE)

5 Due process safeguards Proceduralsafeguards must be put in placefor children and their familiesincluding the right to mediationrequest for complaint investigationandor a due process hearing theright to appeal to a federal districtcourt and if they prevail theright to receive attorneysrsquo fees

6 Parent and student participationand shared decision-makingSchools must collaborate withparents and students with dis-abilities in the design and imple-mentation of special educationservices The parentsrsquo (and when-ever appropriate the studentrsquos)input and wishes must be consid-ered in IEP goals and objectivesrelated-service needs and place-ment decisions

Although IDEA is a federal lawoverseen by the US Department ofEducation its requirements pertainonly to states receiving related fundsHowever at the present time allstates and territories accept federalIDEA funds The statute also allowsstate flexibility and discretion formany of its components

IDEArsquos provisions are separated into4 distinct parts part A consists of itsgeneral provisions part B authorizesthe state grants for services topreschool-aged (3ndash5 years) andschool-aged children (ages 6ndash21years inclusive) with disabilities(Table 1) part C authorizes servicesfor programs of EI for infants andtoddlers (children younger than 3years) and their families and part Dfocuses on personnel improvementwith awards to states for reformingand improving their systems forpersonnel preparation andprofessional development in EIeducational and transition servicesand funding for at least 1 parent

training and information center(wwwparentcenterhuborg) in everystate to provide information trainingand assistance to families of infantstoddlers children and youth withdisabilities

Two other federal laws have roles inensuring the educational rights ofchildren with disabilities AlthoughIDEA serves as both a civil rightsstatute for children with disabilitiesas well as a funding statute centeredon their education section 504 of theRehabilitation Act of 197311 and theAmericans with Disabilities Act (ADA)of 1990 (as amended by the ADAAmendments Act in 2008)12 addresscivil rights broadly prohibitingdiscrimination against any individualwith disabilities and do not provideany federal funds to assist withimplementation Section 504specifically prohibits discriminationagainst a person of any age with adisability in any federally fundedprogram or activity Althoughchildhood education falls within itspurview section 504 includes alllevels of education including collegesand universities which are notcovered under IDEA In its regulationssection 504 requires the provision ofan FAPE in the LRE for all childrenwith disabilities attending publicschools but the regulations onlyrequire reasonable accommodationsfor younger children in child caresettings older youth in college or forother public accommodations Inaddition section 504 extends to anyprivate school that accepts any federalfunds The ADA also prohibitsdiscrimination against individualswith disabilities of all ages and in allareas including employment publicservices and public accommodationssuch as schools It covers all areasof public life and not just thosereceiving federal funding

Although these laws overlap they havedifferent working definitions ofdisability IDEA uses a categoricaldefinition of a child with a disabilityspecifying an eligible child as having an

PEDIATRICS Volume 136 number 6 December 2015 e1651 by guest on September 9 2021wwwaappublicationsorgnewsDownloaded from

intellectual disability (ldquomentalretardationrdquo in its original text)hearing impairments (includingdeafness) speech or languageimpairments visual impairments(including blindness) emotional

disturbance orthopedic impairmentsautism traumatic brain injury otherhealth impairments or specific learningdisabilities IDEA also allows states touse the category of ldquodevelopmentaldelayrdquo for children 3 through 9 years of

age (although not all states elect to usethis category httptadnetpublictadnetorgpages513-productsmain_search=states+use+of+developmental+delayampsearch_query=keywordampx=0ampy=0) In

TABLE 1 Supports From IDEA Law Versus Section 504 (Rehabilitation Act) Versus the ADA

Federal Law IDEA Section 504 (Rehabilitation Act) ADA

Law enacted since 1975 1973 1990Usefulness Requires educational programs for

children with disability that are inaddition to those without disabilityProvides funding only if the condition ofan FAPE is provided

Makes discrimination against people withdisabilities illegal when federal financialassistance is involved (includingschools)

Makes illegal discrimination againstpeople with disabilities not tied tofunding type

Children receive special education andrelated services under this law

Children can receive ldquoregularrdquo educationwith related aids and services orspecial education to satisfy this lawUnder the regulations they are entitledto an FAPE in the LRE just as under IDEA

Eligibility of a childteenwith a disability

Categorical also child must requirespecial education and related services

Functional A physical or mentalimpairment that substantially limits $1of the major life activities of suchindividual

Functional A physical or mentalimpairment that substantially limits $1of the major life activities of suchindividual

Intellectual disability hearing impairments(including deafness) speech orlanguage impairments visualimpairments (including blindness)emotional disturbance orthopedicimpairments autism traumatic braininjury specific learning disabilitiesother health impairments

The ADA Amendments Act specifically listsexamples of major life activitiesincluding caring for oneself performingmanual tasks seeing hearing eatingsleeping walking standing liftingbending speaking breathing learningreading concentrating thinkingcommunicating and working The actalso states that a major life activityincludes the operation of a major bodilyfunction This also covers section 504

The ADA Amendments Act specifically listsexamples of major life activitiesincluding caring for oneself performingmanual tasks seeing hearing eatingsleeping walking standing liftingbending speaking breathing learningreading concentrating thinkingcommunicating and working The actalso states that a major life activityincludes the operation of a major bodilyfunction

All children covered by IDEA are covered bysection 504 but some children coveredby Section 504 are not covered by IDEA

All children covered by IDEA are coveredbut some children covered by the ADAare not covered by IDEA

Examples of disabilities covered (and notalways covered by IDEA) include ADHDdiabetes and asthma In somecircumstances these may be coveredunder ldquoOther Health Impairmentsrdquo in IDEA

Examples of disabilities covered (and notalways covered by IDEA) include ADHDdiabetes and asthma In somecircumstances these may be coveredunder ldquoOther Health Impairmentsrdquo in IDEA

Age group covered IDEA part Bmdashgenerally 3 to 21 y of age All ages (so includes schools colleges anduniversities) The regulations requireFAPE in LRE for school-aged children butreasonable accommodations foryounger or older children or innonpublic school settings such as childcare or college

All ages (so includes schools colleges anduniversities)IDEA part CmdashEIndashinfants and toddlers

Name used for planfor child

IFSP ages birth to 3 y of age Section 504 plan or ldquo504 planrdquo (note an IEPunder IDEA law can satisfy dection 504requirements)

IEP ages 3 y and above

Reference 20USC x1400 et seqa Pub L 94-142b withmost recent amendment Pub L 108-446c

29USC x794d 42USC x12101 et seqe with most recentamendment 110-325f

Not all children in need of supports in school qualify under IDEA law Other laws such as section 504 of the Rehabilitation Act and the ADA can help determine supports necessary to achild with a medical condition in school The table illustrates some of the differences between IDEA (requiring IEP development) section 504 and the ADA ADHD attention-deficithyperactivity disordera 20 USC x1400 Title 20 - Education Education of Children with Disabilities Subchapter I - Definitions section 1400 - Short title findings purposes (2011)b Education of All Handicapped Children Act Pub L No 94-142 (1975)c Individuals with Disabilities Education Improvement Act of 2004 Pub L No 108-446 (2004)d 29 USC x794 Title 29 - Labor Chapter 16 - Vocational Rehabilitation and Other Rehabilitation Services Subchapter V - Rights And Advocacy section 794 - Nondiscrimination under federalgrants and programs (2011)e 42 USC x12101 Title 42 - The Public Health and Welfare Chapter 126 - Equal Opportunity for Individuals with Disabilities section 12101 - Findings and purpose (1990)f ADA Amendments Acts of 2008 Pub L No 110-325 (2008)

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contrast section 504 and the ADAdefine disability generally using thefunctional description of disability asbeing a physical or mental impairmentthat substantially limits a person in amajor life activity (self-care manualtasks seeing hearing eating sleepingwalking standing lifting bendingspeaking breathing learningreading concentrating thinkingcommunicating and working)Conditions such as attention-deficithyperactivity disorder asthma anddiabetes are covered under section504 and the ADA if these conditionsresult in functional limitation Theymay also be covered under the IDEAcategory of ldquoother health impairmentrdquoif the health condition affects thechildrsquos ability to benefit from theeducation program

When a parent or the childrsquos pediatrichealth care provider is concernedabout a childrsquos developmental orschool needs supports may becovered under IDEA section 504 orthe ADA (Tables 1 and 2) If the childis in need of educational supportservices such as special educationspeech-language therapy oroccupational therapy guidance forobtaining services falls within IDEAExamples include a child whoseacademic achievement is notappropriate for his or her age a childwho cannot follow classroominstructions or has disruptivebehaviors preventing learning or achild who cannot write legibly Incontrast a child with a motordisability who needs ambulationassistance or a child with diabeteswho needs school nursing assistancefor the administration of medicationusually receives schoolaccommodations under section 504Finally a school system is violatingthe ADA and section 504 if a childcannot participate in school activitiesbecause of physical barrierspreventing his or her entry into thebuilding or room This situation mayalso be covered under IDEA given itsprovision that children withdisabilities must be able to

participate in all nonacademicand extracurricular activities opento children without disabilitiesGiven the legal nuances of eachregulation a parent of an affectedchild or health care provider maybenefit from consultation with anattorney or educationaldisabilityadvocate The health care provideror parent can obtain furtherinformation from resources such asthe Council of Parent Attorneys andAdvocates (wwwcopaaorg) or theNational Disability Rights Network

(wwwndrnorg) Connecting parentsto their state parent trainingand information center (wwwparentcenterhuborg) can providethem with access to criticalinformation about the process theirchildrsquos rights and their rights underIDEA section 504 and the ADA

INFANTS TODDLERS AND THE IFSP

Although IDEA focuses most of itsattention on children aged 3 yearsand older part C was developed in1986 for the promotion of EI forchildren with developmentaldisabilities from birth to 3 yearsof age As described by Congressit is intended to enhance thedevelopment of infants and toddlerswith disabilities minimize theneed for special education andmaximize the individualrsquos long-termpotential for independent livingPart C recognizes the unique needsof infants and toddlers withgreater emphasis on the family andcommunity particularly emphasizingcare in the home and communitysettings rather than schools andmandating family involvementTherefore the inclusion of familiesas team members is critical indeveloping and implementing theIFSP The IFSP is a written planwith several key components orstatements as follows

1 Service coordinator (ie a pro-fessional responsible for programimplementation)

2 The childrsquos present levels of de-velopment in the following areasphysical (including vision hearingand health status) cognitivecommunication social or emo-tional and adaptive

3 Familyrsquos resources priorities andconcerns related to enhancing thechildrsquos development

4 Measurable results or outcomesexpected to be achieved by thechild and family with criteriaprocedures and timelines to beused

TABLE 2 Examples of Children or TeenagersWho May Qualify for Special Healthandor BehavioralAccommodations and Support in aSchool Setting

bull Child with intellectual or developmentaldisability including the following

autism spectrum disorder

cerebral palsybull Child with learning disabilities

Oral expression

Listening comprehension

Written expression

Basic reading skills

Reading fluency skills

Reading comprehension

Mathematics calculation

Mathematics problem solvingbull Child with condition affecting behavior inschool including those with a mental healthcondition including the following

teen who is suicidal

a child aggressive to others

child shortly after injury with residualissues including the following- child postconcussion38 and other

traumatic brain injury- after automobile or other injury

bull Child with chronic condition affectingperformance including those with episodic oroccasional issues including the following

child with asthma or diabetes

child with seizure disorder

child with allergy to food

child with physical disabilities such asjuvenile arthritis and muscular dystrophyneuromuscular disorders

bull Child with chronic infection either on treatmentor noncompliant including the following

child with HIVAIDS

child with multidrug-resistant tuberculosisbull Child requiring technological supports such as

tube feeding or special modified diet (ietextured or pureed foods or low salt)

ventilator or oxygen

These students may be served by IDEA law section 504 orthe ADA depending on the childrsquos needs in a schoolsetting

PEDIATRICS Volume 136 number 6 December 2015 e1653 by guest on September 9 2021wwwaappublicationsorgnewsDownloaded from

5 EI services necessary (ldquobased onpeer-reviewed research [to theextent practicable]rdquo) including thebeginning date length durationfrequency intensity method ofdelivery and location

6 Provision of services in thenatural environment (ie settingswhere young children withoutdisabilities are typically found) orjustification of why this will not beprovided

7 Educational component for chil-dren 3 years or older when it iselected to continue EI services intothe preschool period Recentchanges in IDEA allow states tocontinue EI services via an IFSPafter 3 years of age and until achild enters kindergarten withparental approval

8 Other service needs includingmedical that are not required orfunded under part C

9 Payment arrangements if anyUnder IDEA states may establishldquofamily cost sharerdquo based on asliding fee scale but families can-not be denied needed servicesbecause of inability to pay Fami-lies may also be asked to allow theEI system to bill their public orprivate insurance to cover neededservices Child find services eval-uations and assessments devel-opment and review of the IFSPand service coordination are pro-vided at no cost to families in allstates and territories

In addition a transition plan forservices necessary transition stepsand program options must be writtenin the IFSP for children nearing3 years of age not fewer than 90 daysand not more than 9 months beforethe third birthday Eligible childrenmust be experiencing developmentaldelays in 1 or more areas ofdevelopment as measured byappropriate tests and procedures orhave a condition that has a highprobability of resulting indevelopmental delay IDEA does notprovide a more specific definition for

eligibility leaving it to the statersquosdiscretion As a result the eligibilitycriteria vary by state Furtherinformation on national and locallaws and services can be found viathe Center for Parent Informationand Resources (httpwwwparentcenterhuborgnichcy-resources) The Center for ParentInformation and Resources hasrelevant information as well asinformation on how to contact parenttechnical assistance centers (httpwwwparentcenterhuborgptacs)

PRESCHOOL- AND SCHOOL-AGED YOUTHAND THE IEP

IEPs are critical for children with adisability or chronic health conditionaffecting school performance andlearning The IEP delineates thespecific special education and relatedservices (eg physical therapy) thatthe child should receive It is helpfulfor health care providers to befamiliar with several commonly usedterms related to IDEA FAPE or freeappropriate public educationprovided in the LRE or leastrestrictive environment are bothrequirements in IDEA law

FAPE does not mean that the school ismandated to provide the ldquobestrdquo orldquooptimalrdquo services for the child tolearn and perform in the school Todecide on what ldquoappropriaterdquo meansthe IEP team and other partners mustdecide what is important to considerand implement for any particularchild The Supreme Court in Board ofEducation of the Hendrick HudsonCentral School District v Rowley 458US 177 (1982)13 held that FAPE issatisfied when the school providesinstruction individualized withenough support services to allow achild to benefit educationally Thisinstruction should enable the child toadvance from grade to grade IDEAdoes not require that each state haveschools fully fulfill the potential ofchildren with disabilities An exampleis a child with quadriplegic spasticcerebral palsy who requires a

wheelchair to get from place to placeIf the childrsquos required classroom is onthe second floor then the IEP needsto specify how the child will get tothat classroom taking the disabilityinto account This situation does notrequire the school to get an elevatorbecause the legal requirement is forldquoreasonable accommodationsrdquo TheIEP team will decide how the childwill get to the classroom whetherthis is by moving the classroom to anaccessible first floor getting anelevator or having some otherappropriate way of getting the childto the second-floor classroomBecause the child is also entitled toparticipate in the nonacademic andextracurricular activities available tochildren without disabilities theschool must also make those activitiesaccessible to the child who uses awheelchair

IDEA law mandates that the childshould be in the LRE or leastrestrictive environment Childrenwith disabilities should be educatedwith children without disabilities ldquotothe maximum extent possiblerdquo whichmeans that they should be in theclassroom that they would be in if notneeding supports unless they cannotaccomplish the goals in their IEPwithout a different placement Thegoal of LRE is to preserve interactionswith typical children and to ensureexposure to educational material andinteractions that may not be found ina more restrictive placement Thefollowing settings are listed fromleast to most restrictiveenvironments (1) typical educationclassroom with in-class supports (2)typical education classroom withperiodic pull-out to special education(resource) placement (3) specialeducation classroom withopportunities for ldquomainstreamingrdquo asappropriate (4) special educationschool and (5) special educationschool with residential placement onsite Even in more restrictive settingsthe IEP must identify opportunitiesfor the child with a disability tointeract with nondisabled peers

e1654 FROM THE AMERICAN ACADEMY OF PEDIATRICS by guest on September 9 2021wwwaappublicationsorgnewsDownloaded from

(eg by bringing a student who isplaced in an ldquoout-of-districtrdquo schoolback to the school district toparticipate in the after-schoolprogram)

The term IEP relates to anindividualized program for eacheligible child Children with specialhealth needsdisabilities or specialhealth needs cannot be placed in aclassroom with only general plans orinstruction There are wide variationsin function manifestation andseverity in any disability or medicalcondition therefore each child with aspecial need requires anindividualized program taking intoaccount his or her strengths andneeds and the effects of the childrsquosdisability on learning Children with acertain condition (eg hearing loss)should not all have the sameeducational program Health careproviders can provide factualinformation to the educational teamdocumenting verifying or certifyingwhat accommodations are essentialon the basis of bona fide medicalneed As child health experts they canassist school personnel in connectinga childrsquos medical condition to his orher educational needs relatedservices and accommodations Indiscussions with school staff thehealth care providers should providespecific advice or direction to theschool district on necessary healthand safety accommodations Healthcare providers can play advisoryadvocacy and collaborative roles butshould take care not to dictate orimpose their own view of preferrededucational methods as this task isbest left to the educational teamincluding the parents The IFSP or IEPshould take into account medicaldiagnoses treatments and supportsto provide special education butthese are not the medical care plansor emergency action plans that schoolnurses and related service providerswould implement for health care atthe school These are discussed inother AAP documents and otherreports5891415

THE ROLE OF THE HEALTH CAREPROVIDER IN ASSISTING CHILDRENWITH SPECIAL EDUCATION NEEDS

1 Identifying Children in Need of EIor Special Education Services

Developmental surveillance andscreening performed in the medicalhome by the primary care provideroften lead to the identification ofchildren with disabilities who requirefurther evaluation to determine theneed for appropriate EI or specialeducation services16 When a child isidentified as having special needs thehealth care provider can refer thechild to appropriate resources such apsychologist or pediatricsubspecialist for further assessmentIn addition referral to the local EI(age 0ndash3 years) or school (3 yearsand older) agency may facilitateevaluation toward possible servicesTo do this health care providers areadvised to be familiar with theappropriate local or state agencies forreferrals Parents may also self-refertheir child Further guidance andforms for health care providers areprovided by the AAP clinical reportsldquoProvision of Educationally RelatedServices for Children and AdolescentsWith Chronic Diseases and DisablingConditionsrdquo17 and ldquoEarlyIntervention IDEA Part C Servicesand the Medical Home Collaborationfor Best Practice and BestOutcomesrdquo18

When a health care provider orparent makes a referral of a child tothe school system representatives ofthe school must determine whetheran evaluation will be conducted If itis decided that an evaluation will beconducted the parent must giveinformed written consent for theevaluation Then the ldquocomprehensivemultidisciplinaryrdquo evaluation mustbe completed by the school within60 days of the parental consent (unlessthe state has a different timeline)followed by development of the IEPMore specifically a meeting must beconducted to develop an IEP within30 days of the eligibility

determination after which specialeducation and related services are tobe made available as soon as possibleIf the district decides it will notconduct an evaluation it mustprovide written information knownas prior written notice to the parentindicating its decision as well as whyit has decided not to conduct anevaluation including all theinformation about the child that wasused to make that determinationand the factors that influenced thedecision what steps the parentscan take if they disagree with thisdecision and sources for parents tocontact to obtain assistance inunderstanding their rights underIDEA At each step the district mustprovide a written response to anyparental written request Follow-upof the referral by the health careprovider can help determinewhether the child is evaluatedappropriately

2 Sharing Relevant Information WithEI or School Personnel

EI programs and schools rely oninteractions with health careproviders to create the plans for achildrsquos appropriate intervention andeducational environment andsupport Parents and guardiansusually share medical and mentalhealth information with EI programsand schools Health care providersmay share a patientrsquos protectedhealth information (PHI) relevant tothe childrsquos education program withschool personnel only after securingappropriate authorization to disclosePHI from the patientrsquos parent or legalrepresentative or guardian Inaddition youth sometimes choose toshare health information with schoolpersonnel When appropriate theyouth or family should be consultedaround information sharingparticularly when the information issensitive in nature When a programor school has a medical professionalon site the childrsquos health informationshould also be shared with thisprofessional who can assist in

PEDIATRICS Volume 136 number 6 December 2015 e1655 by guest on September 9 2021wwwaappublicationsorgnewsDownloaded from

promoting collaboration with themedical home provider Examples ofreports that could be shared includedevelopmental screening resultshearing and vision screening orassessments hospitalization or othermedical summaries (if there areconsequences for the school) chronicmedication treatments and treatmentchanges emergency preparedness19

plans palliative care (which mayinclude do-not-attempt-resuscitationorders at times) and subspecialistconsultations and referrals Healthcare providers are advised20 thatalthough they are required to becompliant with the Health InsurancePortability and Accountability Act21

in speaking with schools schoolsneed to be compliant with the FamilyEducational Rights and Privacy Act22

A form for EI referral thatincorporates the Health InsurancePortability and Accountability Act andthe Family Educational Rights andPrivacy Act considerations has beendeveloped by the AAP in conjunctionwith the US Department of EducationOffice of Special Education Programsand is available for use by health careprofessionals (see SupplementalInformation)489

When communicating with a schoolthe health care provider shouldconsider including his or her contactinformation and the familyrsquos contactinformation and documenting thecommunication in the childrsquos medicalrecord Care needs to be taken so thatthe privacy and security of PHI ispreserved in transmittinginformation Transmittinginformation on letterhead may behelpful for the school to receivepertinent medical details includingon how to reach you as a health careprovider and for providing a datedrecord in the medical chart of theconcerns and requests Howeverhealth care providers should also besensitive to reasons why parents maynot wish to share some or all of thePHI with the school particularlywhen not pertinent to a childrsquos healthor development In such cases a

parent may instead provide copies ofselect records For example althoughit is against the law to do so schoolshave been known to discriminateagainst students with HIV or AIDSAnd although the law requires thatstudents with disabilities be educatedin the LRE regardless of theirdiagnosis some school systems maymake blanket decisions with whichparents do not agree about placementon the basis of a particular disability(eg autism)

The health care provider can considerseveral issues when requestingspecific services for a child withspecial needs Initially the health careprovider can talk to the personresponsible for developing andoverseeing implementation of thechildrsquos IFSP (service coordinator) orIEP which differs depending on thestate In some situations the principalhas responsibility over the childrenand staff at the school and may wantto be involved with importantconversations between the school andoutside professionals The health careprovider should understand that theschool provides FAPE and notnecessarily what would be ldquooptimalrdquofor the child Health care providerscan advise schools about the possibleeducational ramifications of medicalor disabling conditions and suggestsolutions however services inschools are decided collaboratively bythe IFSP or IEP team Writing aprescription for a school to providea particular educational service for achild would be analogous to theschool requesting a certain medicalevaluation or treatment from thehealth care provider This action canresult in an antagonistic rather thancollaborative relationship betweenthe health care provider and theschool

3 Meeting With EI or SchoolPersonnel and ParentsGuardians

Although most busy health careproviders share information with theschool by phone or fax in-personmeetings with EI or school personnel

may also be considered for complexchildren who have many needs withinthe school environment or insituations when the team disagreesabout how a health disability ormental health issue affects the IFSP orthe IEP

If an official IFSP or IEP planningmeeting occurs multiple professionalsare usually involved including anadministrator teachers varioustherapists school nurse counselorsand others making a meeting at the EIprogram or school more convenientHealth care provider involvementthrough letters of support or directadvocacy by meeting attendance maylead to improved medicationcompliance medication monitoring(especially if done by schoolpersonnel) behavioral outcomesparent satisfaction and avoidance ofcorporal punishment and restraintsituations in school settings In statesin which corporal punishment is legalthe health care provider can assistparents in advocating against it and inidentifying an alternative educationalplacement23

4 Using EI or School Information inMedical Diagnostic or TreatmentPlans

The diagnostic evaluation performedby the EI program or school fordetermination of a childrsquos eligibilityfor services can be helpful to thehealth care provider because it offersa standardized assessment of a childrsquosdevelopment or intellectualfunctioning For the young child theevaluation will involve several areasof development including motorcommunication social behavioraladaptive and sensory (hearingvision) skills Optimally EI programsand schools share the results ofevaluations with health careproviders with informed writtenparental consent Programs andschools may require a specific requestfrom the parent to share theseevaluations When received thehealth care provider can review anddiscuss the results with the family

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promoting collaboration with themedical home provider Examples ofreports that could be shared includedevelopmental screening resultshearing and vision screening orassessments hospitalization or othermedical summaries (if there areconsequences for the school) chronicmedication treatments and treatmentchanges emergency preparedness19

plans palliative care (which mayinclude do-not-attempt-resuscitationorders at times) and subspecialistconsultations and referrals Healthcare providers are advised20 thatalthough they are required to becompliant with the Health InsurancePortability and Accountability Act21

in speaking with schools schoolsneed to be compliant with the FamilyEducational Rights and Privacy Act22

A form for EI referral thatincorporates the Health InsurancePortability and Accountability Act andthe Family Educational Rights andPrivacy Act considerations has beendeveloped by the AAP in conjunctionwith the US Department of EducationOffice of Special Education Programsand is available for use by health careprofessionals (see SupplementalInformation)489

When communicating with a schoolthe health care provider shouldconsider including his or her contactinformation and the familyrsquos contactinformation and documenting thecommunication in the childrsquos medicalrecord Care needs to be taken so thatthe privacy and security of PHI ispreserved in transmittinginformation Transmittinginformation on letterhead may behelpful for the school to receivepertinent medical details includingon how to reach you as a health careprovider and for providing a datedrecord in the medical chart of theconcerns and requests Howeverhealth care providers should also besensitive to reasons why parents maynot wish to share some or all of thePHI with the school particularlywhen not pertinent to a childrsquos healthor development In such cases a

parent may instead provide copies ofselect records For example althoughit is against the law to do so schoolshave been known to discriminateagainst students with HIV or AIDSAnd although the law requires thatstudents with disabilities be educatedin the LRE regardless of theirdiagnosis some school systems maymake blanket decisions with whichparents do not agree about placementon the basis of a particular disability(eg autism)

The health care provider can considerseveral issues when requestingspecific services for a child withspecial needs Initially the health careprovider can talk to the personresponsible for developing andoverseeing implementation of thechildrsquos IFSP (service coordinator) orIEP which differs depending on thestate In some situations the principalhas responsibility over the childrenand staff at the school and may wantto be involved with importantconversations between the school andoutside professionals The health careprovider should understand that theschool provides FAPE and notnecessarily what would be ldquooptimalrdquofor the child Health care providerscan advise schools about the possibleeducational ramifications of medicalor disabling conditions and suggestsolutions however services inschools are decided collaboratively bythe IFSP or IEP team Writing aprescription for a school to providea particular educational service for achild would be analogous to theschool requesting a certain medicalevaluation or treatment from thehealth care provider This action canresult in an antagonistic rather thancollaborative relationship betweenthe health care provider and theschool

3 Meeting With EI or SchoolPersonnel and ParentsGuardians

Although most busy health careproviders share information with theschool by phone or fax in-personmeetings with EI or school personnel

may also be considered for complexchildren who have many needs withinthe school environment or insituations when the team disagreesabout how a health disability ormental health issue affects the IFSP orthe IEP

If an official IFSP or IEP planningmeeting occurs multiple professionalsare usually involved including anadministrator teachers varioustherapists school nurse counselorsand others making a meeting at the EIprogram or school more convenientHealth care provider involvementthrough letters of support or directadvocacy by meeting attendance maylead to improved medicationcompliance medication monitoring(especially if done by schoolpersonnel) behavioral outcomesparent satisfaction and avoidance ofcorporal punishment and restraintsituations in school settings In statesin which corporal punishment is legalthe health care provider can assistparents in advocating against it and inidentifying an alternative educationalplacement23

4 Using EI or School Information inMedical Diagnostic or TreatmentPlans

The diagnostic evaluation performedby the EI program or school fordetermination of a childrsquos eligibilityfor services can be helpful to thehealth care provider because it offersa standardized assessment of a childrsquosdevelopment or intellectualfunctioning For the young child theevaluation will involve several areasof development including motorcommunication social behavioraladaptive and sensory (hearingvision) skills Optimally EI programsand schools share the results ofevaluations with health careproviders with informed writtenparental consent Programs andschools may require a specific requestfrom the parent to share theseevaluations When received thehealth care provider can review anddiscuss the results with the family

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providing interpretation as neededbecause such information may beuseful in determination of aspecific developmental diagnosisintellectual or learning disabilityspeech-language disorder or motordisability

Other school information can also beextremely helpful if not critical formedical developmental andbehavioral health care Examplesinclude information about behaviorfor the diagnosis and follow-up forchildren with attention-deficithyperactivity disorder autismspectrum disorder depression orseizure disorder Often a decreasein school performance or onset of anew behavioral concern is the firstsign of a medical condition or apoorly managed chronic diseaseChildren may have worsening orreoccurrence of symptoms at schooland school personnel may befrontline reporters for certainsituations

5 Working Within an EI ProgramSchool or School-Based Health Clinic

Health care providers may be keypersonnel at an EI program or schoolwhether they are there because of amandatory requirement part of aschool-based health center orconsultant for the school systemThese personnel may be part of IFSPor IEP discussions depending on theroles delineated by the position Somephysicians may be part of aldquocommunity schoolrdquo system apartnership between the schooland other community resources(wwwcommunityschoolsorgaboutschoolswhat_is_a_community_schoolaspx) In this role thephysician can assist in the resolutionof health issues affecting performanceof the school system Furtherinformation about the role ofphysicians in schools can be foundin the AAP policy statements ldquoTheRole of the School Physicianrdquo24

and ldquoSchool-Based Health Centersand Pediatric Practicerdquo25

6 Working at an Administrative LevelTo Improve School FunctioningAround Children With Special Needs

Some health care providers may workat an administrative level as in afederal state or local agency toensure that local EI agencies orschools are well equipped to beresponsive to the needs of studentswith special needs including the needfor related services (eg speech-language physical and occupationaltherapy) nursing medication andany special modified diets ornutritional needs Each state has aninteragency coordinating councilfor EI and a state advisory panelfor special education (wwwstateadvisorypanelorgindexphpoption=com_contentampview=articleampid=21ampItemid=40) Inaddition to serving on the councilanother opportunity is providingpublic comment during meetings

SERVICES FOR CHILDREN WITHDISABILITIES IN PUBLIC VERSUSPRIVATE SCHOOLS

Currently there are several ways thata child with a disability can attend aprivate school A local educationalagency (an entity that operatesschools within the state) or anotherstate educational agency candetermine that a student may beplaced within a private school tofulfill FAPE In this situation theschool system pays for the costs ofthe services at the private schoolAlternatively the studentrsquos parents orguardians may elect independently toplace a child in a private school eitherbefore or after being determinedeligible for special education Thestate school system or localeducational agency is not required topay for this placement unless ahearing officer determines that ldquotheagency had not made a freeappropriate public education (FAPE)available to the child in a timelymanner prior to that enrollmentrdquo26

Whether the requirement of FAPE ismet within an educational program

that the public education systemprovides is a common source ofcontention The requirement of FAPEis met when a child is provided withindividualized instruction with enoughsupport services to have educationalbenefits when the services are paid atpublic expense and when the servicesmeet the statersquos standards foreducation are at the grade levels usedin the statersquos regular educationservices and are conducted inaccordance with the childrsquos IEP13

The local or state educational agencycan place the child in a differentprivate school program than the onethe parents want if it meets therequirement of FAPE27 Also if theprivate school does not adequatelyaddress the childrsquos educationrequirements then courts may notrequire reimbursement to the privateschool28 If the placement is not foreducational reasons for example formedical or religious reasonsreimbursement to the private schoolmay also not be required29

Finally local educational agencies arerequired to identify children withdisabilities including those attendingprivate schools Health care providerscan be quite helpful to children inprivate schools by working inconjunction with the parents orguardians to relay information to thepublic school system as describedpreviously

BEHAVIORAL AND MENTAL HEALTHISSUES FOR CHILDREN WITHDISABILITIES IN THE SCHOOLENVIRONMENT

When a student with a disabilitybreaks a rule of conduct in a schoolhe or she would be subject todisciplinary action However IDEAdoes have bearing on this and theprocess may not be identical to that ofa child without a disability Choicesfor the school regarding studentinfractions include the following

bull evaluation of the childrsquos behaviorwith development of a new

PEDIATRICS Volume 136 number 6 December 2015 e1657 by guest on September 9 2021wwwaappublicationsorgnewsDownloaded from

behavior plan within the IEP andclass and school incorporation

bull removal from current placement toanother classroom or school set-ting or suspension up to 10 days

bull placement in another educationalsetting for up to 45 days if thestudent used a weapon drugs orinflicted serious bodily injury onanother or if the current placementwould cause injury to the child orothers and

bull if the studentrsquos behavior is not amanifestation of the studentrsquos dis-ability or of the failure of the sys-tem to implement the IEP the localeducational agency can implementlong-term disciplinary action in-cluding expulsion after a manifes-tation determination review

The rules on disciplinary action inIDEA are complicated and someguidance is available from a USDepartment of Education Web siteldquoQ and A Questions and Answers onDiscipline Proceduresrdquo (httpideaedgovexploreviewprootdynamicQaCorner7) which is notmeant to be legally binding If thepediatrician believes the schoolrsquosactions are inappropriate on thebasis of the childrsquos disability he or shecan initiate a discussion with schoolpersonnel on the childrsquos behalf advisethe parents to request an IEP reviewandor seek legal counsel Additionalguidance can be found in an AAPpolicy entitled ldquoOut-of-SchoolSuspension and Expulsionrdquo30

IDEA states that the use of positivebehavioral interventions must beconsidered31 and a functionalbehavioral assessment must be usedto determine causes of behavioralissues and possible proactiveinterventions In addition amanifestation determination reviewmust be conducted to decide whetherthe behavior is associated with thechildrsquos disability before any change inplacement can be made There hasbeen much concern about the use ofseclusions and restraints especially

since the Government AccountabilityOffice reported hundreds of allegedinstances of death and abuse inschools using these techniquesespecially among children withdisabilities32 The GovernmentAccountability Office also reportedthat there is no federal law for eitherpublic or private schools regardingrestraints and seclusions and thereare widely divergent state lawsRecommended standards regardingrestraints seclusion and corporalpunishment are provided in the AAPbook Caring for Our ChildrenNational Health and SafetyPerformance Standards Guidelines forEarly Care and Education Programs15

In addition the AAP Council onChildren With Disabilities has a policystatement33 opposing themaltreatment of children withdisabilities by use of inappropriaterestraints seclusion and aversiveinterventions Therefore althoughrestraints seclusion and corporalpunishment can be used in somestates when such interventions areused the health care provider shouldadvise the parents about the potentialeffects of these practices on theirchildrsquos health education anddevelopment

THERAPIES AND MEDICAL SERVICES INTHE IEP AND DURABLE EQUIPMENT INSCHOOLS

Most medical professionals realizethat various therapies such asphysical therapy occupationaltherapy and speech and languagetherapy may be required to support achild with a disability to benefit fromspecial education These therapies areconsidered ldquorelated servicesrdquo byIDEA IDEA sets forth many relatedservices that should be considered forchildren with disabilities (Table 3)

IDEA considers a medical service tobe a related service if it is limited todiagnostic and evaluation purposesCourts have helped identify whichmedical services the school isrequired to provide and which

services should be provided outsidethe school environment

The Supreme Court case IrvingIndependent School District v Tatro34

stipulated that medical servicesshould be provided by the school if thechild has a disability requiring specialeducation the service is required tohelp a child with a disability benefitfrom special education and a nurse orother qualified person who is not aphysician can provide the service In asubsequent Supreme Court case CedarRapids Community School District vGarret F35 the Court continued tostate that services by physicians orhospitals are not allowable in IEPs butindicated that nursing services such asclean intermittent catheterization andfull-time nursing can be relatedservices if the child requires them toattend school

Assistive devices and durable medicalequipment such as wheelchairs inschools may be paid for by severalroutes including Medicaid the StateChild Health Insurance Program StateAssistive Technology Centers medicalinsurance civic and volunteerorganizations or assistive technologymanufacturers36

TABLE 3 Related Services in IDEA

Counseling services including rehabilitationcounseling

Interpreting services (sign language)Medical services (these cannot be services thatare provided by the physician or hospital)

One-on-one instructional aideOrientation and mobility servicesPhysical and occupational therapyPsychological servicesRecreation including therapeutic recreationSchool nurse services designed to enable a childwith a disability to receive an FAPE as describedin the IEP of the child

Social work servicesSpeech-language pathology and audiologyservices

Technological devices such as special computersor voice-recognition software

Nonsurgically implanted devices or replacementof one (including cochlear implant)

Transportation

20 USC x1401 Title 20 - Education Education of Childrenwith Disabilities Subchapter I - Definitions section 1401 -General provisions (2011)

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ENTRY INTO AND TRANSITIONS INSERVICES

There are several important entrypoints into and transitions forpatients with disabilities to connectto necessary services Children fromfamilies who relocate to differentschools or cities or from homeschooling around transition pointsare especially at risk of losingeducational services and supports

Initial Referral to EI or SpecialEducation

When a parent or health careprovider discovers developmentalproblems or a disability linkage to EIor special education will lead toreceipt of special services which mayoccur at birth for a child with trisomy21 when symptoms and signs ofautism manifest in toddlers topreschool-aged children or whensymptoms of psychosis becomeapparent later in childhood oradolescence A follow-up clinic visitor phone call can help to check that afamily has connected their child witha disability to the EI program orschool system

Transition From EI to School

When a child is already involved withEI and has an IFSP the IFSP team willusually ensure that the childrsquos parentsor guardians are oriented totransitioning their childrsquos supports tospecial education as necessaryusually at 3 years of age Ideallymembers of the IFSP team will attendthe IEP meeting at the childrsquos schoolto share information and plantransition services Discussing thistransition with parents and a follow-up clinic visit or phone call can helpthis transition occur smoothly andensure there is not a loss of services

Transition to a New School

Families of children with specialneeds may be concerned about thetransition from elementary to middleschool or from middle school to highschool particularly if their child isphysically or emotionally immature

The family may worry aboutadjustment of their child to the newschool with other childrendeveloping more rapidly than theirchild and may also worry about thesubsequent stigmatization that oftenhappens Parents may fear that otherchildren may take advantage of theirchild at the new school Parents mayalso be unsure of the quality of IEPspecial education or related servicesat the new school In collaborationwith the personnel from the newschool the health care provider canuncover and explore these issues withthe family so that solutions andtransition plans can be made Thestudent and the parents can visitthe new school to explore thepossibilities and advantages of thenew setting Special educationsupports and related services at thenew school can be explained andshown to the student and his or herparents

It is important for families tounderstand their rights during thisprocess If the family moves toanother neighborhood in the samedistrict their childrsquos IEP is transferredto the new school and implementedas written (There may be someinstances in which the parent anddistrict may agree that a child shouldstay at his or her current school evenafter moving either because of how aschool transfer would affect theschool or because of the lack ofavailability of needed services at theschool closest to the familyrsquos newneighborhood)

If the family moves within thesame state but to a different schooldistrict that district may eitheradopt their childrsquos IEP or develop anew IEP in collaboration with theparent(s) Until it opts to develop anew IEP it must provide services andsettings comparable to thosedescribed in the current IEPdeveloped by the previous schoolsystem pending an IEP meeting withthe parents to review and revise theIEP if needed

If the family moves to a differentstate the new school in that statemust also provide services andsettings comparable to the IEP fromthe previous state until a newevaluation is conducted (if needed)and a new IEP is developed andimplemented (if needed) The districtdecides whether it can accept theevaluation from the district inanother state or needs to conduct itsown evaluation If the district decidesthat an evaluation is not needed ameeting still needs to take place withthe parents to develop a new IEP Ifthe district decides that it mustconduct a new evaluation todetermine whether the child is still aneligible child with a disability in thatstate and the evaluation determinesthat the child is eligible in the newstate then a meeting must take placewith the parents to develop an IEPaccording to that statersquos policies andprocedures

Regardless of the reasons a child isstarting a new school the childshould not be sitting at home withoutservices pending these decisions Ineach case the childrsquos IEP or servicesand settings comparable to those inthe childrsquos IEP must be implementedpending these further discussions anddecisions

Transition From School to Adulthood

The transition from school toadulthood is a critical transition thatrequires individualized goals andsupports for each student Parents(and sometimes school staff) mayoverestimate or underestimate achildrsquos ability causing inappropriateprogramming for special educationand related services The health careprovider can assist in the formalplanning and bridge-building neededfor successful completion Health careproviders school personnel andparents or guardians are advised tobegin discussion of this transition at14 to 16 years of age (depending onthe state) and to continuecommunication during the transitionprocess One cannot overstate the

PEDIATRICS Volume 136 number 6 December 2015 e1659 by guest on September 9 2021wwwaappublicationsorgnewsDownloaded from

importance of knowing the youth andknowing what the family understandsabout their childrsquos potential The besttransitions to adulthood occur whenIEPs fit studentsrsquo capabilities and arebased on their interests prioritiesand hopes and dreams for the future

Ideally the educational system shouldprepare youth with disabilities forcompetitive employment if notpostsecondary (after high school)education A vocational rehabilitationexpert should be a collaborativemember of the studentrsquos team ifcommunity college or universitysettings do not match the studentrsquosaptitude Problems with supportstoward employment have beenexplored in several analyses1737

These include issues with using anadult vocational system for youthwith disabilities In addition familiesare worried about SupplementalSecurity Income and other benefitsbeing lost when their teenager isemployed

Additional considerations for an IEPthat is focused on the transition toadulthood include a comprehensivebehavioral plan focused on improvedinteractions with others andtherapies to help students becomemobile in the community For somestudents with intellectual or otherdevelopmental disabilitiesguardianship may be an importantconsideration In most states astudent is considered an emancipatedadult (ie his or her own legalguardian) at 18 years of age At theage of majority youth with disabilitiesare empowered to make their ownIEP decisions regardless of theirparentsrsquo wishes unless the parentsecures their written consent for theparents to continue to make IEPdecisions or secures guardianshipSome individuals do not have thecapacity to safely care for themselvesor make their own decisions evenafter reaching the age of majority Acourt proceeding is necessary foranother person to gain or maintainguardianship and requires serious

considerations of the personrsquos needsand capacity for decision-makingHealth care providers can help oftenfearful parents understand the valueof the young adult being able to makeas many decisions as possible Somestates have limited guardianshipswhich do not take away all of theyoung adultrsquos rights Alternatives toguardianship should be consideredand may include power of attorney orhealth care proxy The school canassist with this process by providinginformation for the proceeding suchas psychological testing or otherevaluations performed

CONCLUSIONS

Services provided under IDEA andother federal laws are essentialsupports for children with specialneeds to learn and be integrated andcontributing members of theircommunities Health care providershave an important role in supportingthe education of children withdisabilities and other health issuesand their families and in supportingEI and school programs Health careproviders are advised to understandthe basic elements of federal lawincluding the public school mandateto provide an FAPE to qualifiedstudents in the LRE Althoughproviders are advised to respect theeducational expertise of schoolprofessionals they can safeguard thatchildren with disabilities and otherhealth or behavioral issues receiveappropriate services from EI andschool programs throughout theirchildhood years Providers canparticularly support these childrenand their families through criticaltransitions from the initial referral toEI and school systems through thetransition into adulthood

RESOURCES

Center for Parent Information and Re-sources wwwparentcenterhuborg

Jones NL Education of Individualswith Disabilities The Individuals

with Disabilities Education Act(IDEA) Section 504 of the Re-habilitation Act and the Americanswith Disabilities Act (ADA) CRSReport for Congress (R40123)February 3 2011

Jones NL The Individuals with Dis-abilities Education Act (IDEA)Statutory Provisions and RecentLegal Issues CRS Report for Con-gress (R40690) December 3 2010

Jones NL The Individuals with Dis-abilities Education Act (IDEA) Pri-vate Schools CRS Report forCongress (R41678) March 102011

Jones NL The Individuals with Dis-abilities Education Act (IDEA) Se-lected Judicial DevelopmentsFollowing the 2004 Reauthoriza-tion CRS Report for Congress(R40521) November 10 2010

National Center for Learning Disabil-ities httpwwwncldorg

US Department of Education Office ofSpecial Education and Re-habilitation Services (OSERS)httpwww2edgovaboutofficeslistosersindexhtml

LEAD AUTHORS

Paul H Lipkin MDJeffrey Okamoto MD

COUNCIL ON CHILDREN WITH DISABILITIESEXECUTIVE COMMITTEE 2014ndash2015

Kenneth W Norwood Jr MD ChairpersonRichard C Adams MDTimothy J Brei MDRobert T Burke MD MPHBeth Ellen Davis MD MPHSandra L Friedman MD MPHAmy J Houtrow MD PhD MPHSusan L Hyman MDDennis Z Kuo MD MHSGarey H Noritz MDRenee M Turchi MD MPHNancy A Murphy MD Immediate Past Chairperson

LIAISONS

Carolyn Bridgemohan MD ndash Section on

Developmental and Behavioral Pediatrics

Georgina Peacock MD MPH ndash Centers for Disease

Control and Prevention

Marie Mann MD MPH ndash Maternal and Child Health

Bureau

Nora Wells MSEd ndash Family Voices

Max Wiznitzer MD ndash Section on Neurology

e1660 FROM THE AMERICAN ACADEMY OF PEDIATRICS by guest on September 9 2021wwwaappublicationsorgnewsDownloaded from

importance of knowing the youth andknowing what the family understandsabout their childrsquos potential The besttransitions to adulthood occur whenIEPs fit studentsrsquo capabilities and arebased on their interests prioritiesand hopes and dreams for the future

Ideally the educational system shouldprepare youth with disabilities forcompetitive employment if notpostsecondary (after high school)education A vocational rehabilitationexpert should be a collaborativemember of the studentrsquos team ifcommunity college or universitysettings do not match the studentrsquosaptitude Problems with supportstoward employment have beenexplored in several analyses1737

These include issues with using anadult vocational system for youthwith disabilities In addition familiesare worried about SupplementalSecurity Income and other benefitsbeing lost when their teenager isemployed

Additional considerations for an IEPthat is focused on the transition toadulthood include a comprehensivebehavioral plan focused on improvedinteractions with others andtherapies to help students becomemobile in the community For somestudents with intellectual or otherdevelopmental disabilitiesguardianship may be an importantconsideration In most states astudent is considered an emancipatedadult (ie his or her own legalguardian) at 18 years of age At theage of majority youth with disabilitiesare empowered to make their ownIEP decisions regardless of theirparentsrsquo wishes unless the parentsecures their written consent for theparents to continue to make IEPdecisions or secures guardianshipSome individuals do not have thecapacity to safely care for themselvesor make their own decisions evenafter reaching the age of majority Acourt proceeding is necessary foranother person to gain or maintainguardianship and requires serious

considerations of the personrsquos needsand capacity for decision-makingHealth care providers can help oftenfearful parents understand the valueof the young adult being able to makeas many decisions as possible Somestates have limited guardianshipswhich do not take away all of theyoung adultrsquos rights Alternatives toguardianship should be consideredand may include power of attorney orhealth care proxy The school canassist with this process by providinginformation for the proceeding suchas psychological testing or otherevaluations performed

CONCLUSIONS

Services provided under IDEA andother federal laws are essentialsupports for children with specialneeds to learn and be integrated andcontributing members of theircommunities Health care providershave an important role in supportingthe education of children withdisabilities and other health issuesand their families and in supportingEI and school programs Health careproviders are advised to understandthe basic elements of federal lawincluding the public school mandateto provide an FAPE to qualifiedstudents in the LRE Althoughproviders are advised to respect theeducational expertise of schoolprofessionals they can safeguard thatchildren with disabilities and otherhealth or behavioral issues receiveappropriate services from EI andschool programs throughout theirchildhood years Providers canparticularly support these childrenand their families through criticaltransitions from the initial referral toEI and school systems through thetransition into adulthood

RESOURCES

Center for Parent Information and Re-sources wwwparentcenterhuborg

Jones NL Education of Individualswith Disabilities The Individuals

with Disabilities Education Act(IDEA) Section 504 of the Re-habilitation Act and the Americanswith Disabilities Act (ADA) CRSReport for Congress (R40123)February 3 2011

Jones NL The Individuals with Dis-abilities Education Act (IDEA)Statutory Provisions and RecentLegal Issues CRS Report for Con-gress (R40690) December 3 2010

Jones NL The Individuals with Dis-abilities Education Act (IDEA) Pri-vate Schools CRS Report forCongress (R41678) March 102011

Jones NL The Individuals with Dis-abilities Education Act (IDEA) Se-lected Judicial DevelopmentsFollowing the 2004 Reauthoriza-tion CRS Report for Congress(R40521) November 10 2010

National Center for Learning Disabil-ities httpwwwncldorg

US Department of Education Office ofSpecial Education and Re-habilitation Services (OSERS)httpwww2edgovaboutofficeslistosersindexhtml

LEAD AUTHORS

Paul H Lipkin MDJeffrey Okamoto MD

COUNCIL ON CHILDREN WITH DISABILITIESEXECUTIVE COMMITTEE 2014ndash2015

Kenneth W Norwood Jr MD ChairpersonRichard C Adams MDTimothy J Brei MDRobert T Burke MD MPHBeth Ellen Davis MD MPHSandra L Friedman MD MPHAmy J Houtrow MD PhD MPHSusan L Hyman MDDennis Z Kuo MD MHSGarey H Noritz MDRenee M Turchi MD MPHNancy A Murphy MD Immediate Past Chairperson

LIAISONS

Carolyn Bridgemohan MD ndash Section on

Developmental and Behavioral Pediatrics

Georgina Peacock MD MPH ndash Centers for Disease

Control and Prevention

Marie Mann MD MPH ndash Maternal and Child Health

Bureau

Nora Wells MSEd ndash Family Voices

Max Wiznitzer MD ndash Section on Neurology

e1660 FROM THE AMERICAN ACADEMY OF PEDIATRICS by guest on September 9 2021wwwaappublicationsorgnewsDownloaded from

STAFF

Stephanie Mucha MPH

COUNCIL ON SCHOOL HEALTH EXECUTIVECOMMITTEE 2014ndash2015

Jeffrey Okamoto MD ChairpersonMandy Allison MD MSPHRichard Ancona MDElliott Attisha DOCheryl De Pinto MD MPHBreena Holmes MDChris Kjolhede MD MPHMarc Lerner MDMark Minier MDAdrienne Weiss-Harrison MDThomas Young MD

LIAISONS

Elizabeth Mattey MSN RN NCSN ndash National

Association of School Nurses

Linda Grant MD MPH ndash American School Health

Association

Veda Johnson MD ndash School-Based Health Alliance

STAFF

Madra Guinn-Jones MPH

ABBREVIATIONS

AAP American Academy ofPediatrics

ADA Americans with DisabilitiesAct

EI early interventionFAPE free appropriate public

educationIDEA Individuals With Disabilities

Education ActIEP individualized education

programIFSP individualized family service

planLRE least restrictive environmentPHI protected health information

REFERENCES

1 Boyle CA Boulet S Schieve LA et alTrends in the prevalence ofdevelopmental disabilities in USchildren 1997ndash2008 Pediatrics 2011127(6)1034ndash1042

2 The Individuals with DisabilitiesEducation Act 20USC x1400 (2004)

3 Cartwright JD American Academy ofPediatrics Council on Children WithDisabilities Provision of educationallyrelated services for children and

adolescents with chronic diseases anddisabling conditions Pediatrics 2007119(6)1218ndash1223

4 Duby JC American Academy ofPediatrics Council on Children WithDisabilities Role of the medical home infamily-centered early interventionservices Pediatrics 2007120(5)1153ndash1158

5 Magalnick H Mazyck D AmericanAcademy of Pediatrics Council on SchoolHealth Role of the school nurse inproviding school health servicesPediatrics 2008121(5)1052ndash1056

6 Council on School Health Policystatementmdashguidance for theadministration of medication in schoolPediatrics 2009124(4)1244ndash1251

7 Taras HL American Academy ofPediatrics Committee on SchoolHealth School-based mental healthservices Pediatrics 2004113(6)1839ndash1845

8 Donohue E Craft C eds ManagingChronic Health Needs in Child Care andSchools A Quick Reference Guide ElkGrove Village IL American Academy ofPediatrics 2009

9 Jones N The Individuals With DisabilitiesEducation Act Congressional Intent CRSReport for Congress (95-669)Congressional Research Service Libraryof Congress 1995

10 Apling R Jones N The Individuals WithDisabilities Education Act (IDEA)Overview and Selected Issues CRSReport for Congress (RS22590)Congressional Research Service Libraryof Congress 2008

11 Section 504 of the Rehabilitation Act of1973 29USC x701 et seq (1973)

12 Americans with Disabilities Act Pub L No101-336 104 Stat 328 (1990) amendedPub L 110-325 (2008)

13 Board of Education of the HendrickHudson Central School District v Rowley458 US 177 (1982)

14 Sicherer SH Mahr T American Academyof Pediatrics Section on Allergy andImmunology Management of food allergyin the school setting Pediatrics 2010126(6)1232ndash1239

15 American Academy of PediatricsAmerican Public Health AssociationNational Resource Center for Health and

Safety in Child Care and Early EducationCaring for our children National Healthand Safety Performance Standardsguidelines for early care and educationprograms 3rd ed Elk Grove Village ILAmerican Academy of PediatricsWashington DC American Public HealthAssociation 2011 Available at httpnrckidsorg Accessed October 19 2015

16 Council on Children With DisabilitiesSection on Developmental BehavioralPediatrics Bright Futures SteeringCommittee Medical Home Initiatives forChildren With Special Needs ProjectAdvisory Committee Identifying infantsand young children with developmentaldisorders in the medical home analgorithm for developmentalsurveillance and screening Pediatrics2006118(1)405ndash420

17 Wittenburg DC Golden T Fishman METransition options for youth withdisabilities an overview of the programsand policies that affect the transitionfrom school J Vocat Rehabil 200217195ndash206

18 Adams RC Tapia C Council on ChildrenWith Disabilities Early intervention IDEApart C services and the medical homecollaboration for best practice and bestoutcomes Pediatrics 2013132(4)Available at wwwpediatricsorgcgicontentfull1324e1073

19 American Academy of PediatricsCommittee on Pediatric EmergencyMedicine and Council on ClinicalInformation Technology AmericanCollege of Emergency PhysiciansPediatric Emergency MedicineCommittee Policy statementmdashemergency information forms andemergency preparedness forchildren with special health careneeds Pediatrics 2010125(4)829ndash837

20 US Department of Health and HumanServices US Department of EducationJoint Guidance on the Application of theFamily Educational Rights and PrivacyAct (FERPA) and the Health InsurancePortability and Accountability Act of 1996(HIPAA) to student health recordsWashington DC US Department ofEducation November 2008 Available atwwwhhsgovocrprivacyhipaaunderstandingcoveredentitieshipaaferpajointguidepdf AccessedMarch 18 2015

PEDIATRICS Volume 136 number 6 December 2015 e1661 by guest on September 9 2021wwwaappublicationsorgnewsDownloaded from

21 Health Insurance Portability andAccountability Act Pub L No 104-191 110Stat 1936 (1996)

22 Family Educational Rights and PrivacyAct Pub L No 93-380 (1974)

23 American Academy of PediatricsCommittee on School HealthCorporal punishment in schoolsPediatrics 2000106(2)343 ReaffirmedFebruary 2012

24 Devore CD Wheeler LS AmericanAcademy of Pediatrics Council on SchoolHealth Role of the school physicianPediatrics 2013131(1)178ndash182

25 American Academy of Pediatrics Councilon School Health School-based healthcenters and pediatric practicePediatrics 2012129(2)387ndash393

26 20 USC x1412(a)(10)(C)(ii) Title 20 -Education Education of Children withDisabilities Subchapter 11 - Assistancefor Education of All Children withDisabilities section 1412 - Stateeligibility (2011)

27 MH and JH v Monroe-Woodbury CentralSchool District 296 Fed Appx 126 (2d Cir2008) cert denied 557 US 129 SCt 1584173 LEd 2d 676 (2009)

28 Lauren P v Wissahickeon School District310 Fed Appx 552 (3d Cir 2009)

29 Courtney v School District ofPhiladelphia 575 F3d 235 (3d Cir 2009)

30 American Academy of Pediatrics Councilon School Health Policy statement out-of-school suspension and expulsionPediatrics 2013131(3)e1000ndashe1007Available at wwwpediatricsorgcgicontentfull1313e1000

31 20 USC x1414(d)(3)(B) Title 20 -Education Education of Children withDisabilities Subchapter 11 - Assistancefor Education of All Children withDisabilities section 1414 - Evaluationseligibility determinations individualizededucation programs and educationalplacements (2011)

32 Seclusions and restraints selectedcases of death and abuse at public andprivate schools and treatment centersWashington DC US GovernmentAccountability Office 2009 Publication GAO-09-719T Available at wwwgaogovproductsGAO-09-719T Accessed March 18 2015

33 Hibbard RA Desch LW AmericanAcademy of Pediatrics Committee onChild Abuse and Neglect American

Academy of Pediatrics Council onChildren With Disabilities Maltreatmentof children with disabilities Pediatrics2007119(5)1018ndash1025

34 Irving Independent School Districtv Tatro 468 US 883 (1984)

35 Cedar Rapids Community School Districtv Garret F 526 US 66 (1999)

36 Brady R American Physical TherapyAssociation Practice Committee of theSection on Pediatrics FactsheetmdashAssistive Technology and theIndividualized Education ProgramAlexandria VA American PhysicalTherapy Association 2007

37 US Government Accountability OfficeStudents With Disabilities Better FederalCoordination Could Lesson Challenges inthe Transition from High SchoolWashington DC US GovernmentAccountability Office 2012 PublicationGAO-12-594

38 Halstead ME McAvoy K Devore CD CarlR Lee M Logan K Council on SportsMedicine and Fitness Council on SchoolHealth Returning to learning following aconcussion Pediatrics 2013132(5)948ndash957

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DISABILITIES and COUNCIL ON SCHOOL HEALTHPaul H Lipkin Jeffrey Okamoto and the COUNCIL ON CHILDREN WITH

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