prescribing physical, occupational, and speech therapy...

CLINICAL REPORT Guidance for the Clinician in Rendering Pediatric Care

Prescribing Physical, Occupational, andSpeech Therapy Services for ChildrenWith DisabilitiesAmy Houtrow, MD, PhD, MPH, FAAP, FAAPMR,a Nancy Murphy, MD, FAAP, FAAPMR,b COUNCIL ON CHILDREN WITH DISABILITIES

abstractPediatric health care providers are frequently responsible for prescribingphysical, occupational, and speech therapies and monitoring therapeuticprogress for children with temporary or permanent disabilities in theirpractices. This clinical report will provide pediatricians and other pediatrichealth care providers with information about how best to manage thetherapeutic needs of their patients in the medical home by reviewing theInternational Classification of Functioning, Disability and Health; describing thegeneral goals of habilitative and rehabilitative therapies; delineating the types,locations, and benefits of therapy services; and detailing how to writea therapy prescription and include therapists in the medical homeneighborhood.

Pediatricians and other pediatric health care providers have a vitallyimportant role of linking children and youth with disabilities in theirfamily-centered primary care medical homes with appropriatecommunity-based services.1 Pediatric providers are often asked(frequently by families) or recognize the need to prescribe habilitative andrehabilitative therapies (physical, occupational, and speech and language)for infants, children, and youth with disabilities in their clinical practices.Many general pediatric providers describe inadequate training toappropriately prescribe therapy in the various settings in which they maybe available to children with disabilities.2–5 This clinical report will review(1) the framework of the International Classification of Functioning,Disability and Health (ICF) for understanding the interaction betweenhealth conditions and personal and environmental factors that result indisability, (2) children with disabilities and the goals of habilitation andrehabilitation services, (3) the types of therapy services available withtheir general indications, (4) the locations in which children may receivetherapy services and potential facilitators and barriers to securing therapyservices, (5) the existing literature regarding the benefits of therapy and

aDepartment of Physical Medicine and Rehabilitation and Pediatrics,University of Pittsburgh, Pittsburgh, Pennsylvania; and bDivision ofPediatric Physical Medicine and Rehabilitation, Department ofPediatrics, University of Utah, Salt Lake City, Utah

Drs Houtrow and Murphy were each responsible for all aspects ofconceptualizing, writing, editing, and preparing the document forpublication; and both authors approved the final manuscript assubmitted.

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 reaffirmed,revised, or retired at or before that time.

DOI: https://doi.org/10.1542/peds.2019-0285

Address correspondence to Amy J. Houtrow, MD, PhD, MPH, FAAP,FAAPMR. E-mail: [email protected]

To cite: Houtrow A, Murphy N, AAP COUNCIL ON CHILDRENWITH DISABILITIES. Prescribing Physical, Occupational, andSpeech Therapy Services for Children With Disabilities.Pediatrics. 2019;143(4):e20190285

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https://doi.org/10.1542/peds.2019-0285

mailto:[email protected]

how therapy may be dosed tooptimize functional outcomes, and (6)recommendations for writing therapyprescriptions. Two case examples areprovided to aid the pediatric healthcare provider in developing expertisein addressing the therapy needs ofchildren with disabilities in theirpractices.

ICF

The World Health Organization(WHO) released the ICF in 2001as an update to the InternationalClassification of Impairments,Disabilities, and Handicaps.6 TheWHO has developed 2 classificationsystems that can be used to describean individual’s health at a particularpoint in time. Physicians are morefamiliar with the WHO’s InternationalClassification of Diseases (ICD),currently in its 10th revision, whichclassifies diseases and other healthproblems. Because a diagnosis aloneoften does not provide a robustcharacterization of one’s health,complementing the InternationalClassification of Diseases, 10thRevision, is the ICF, a classificationsystem with a biopsychosocialframework for describing functioningand disability associated with one’shealth conditions.7

The ICF describes the relationshipbetween health conditions diagnosedand coded in the ICD and the personaland environmental factors that act asfacilitators or barriers to functioning.8

Houtrow and Zima9 providedexamples of the ICF and ICD togetherfor common pediatric diagnoses in2017. There are 3 identified levels offunctioning: the body part or organsystem, the person, and the person insocial situations.7 These levelscorrespond to body functions,activities, and participation,respectively. Disability is the umbrellaterm for impairments at the bodypart or organ system level, activityrestrictions at the person level, andparticipation restrictions at the

person-in-society level.7 The WHOdefines impairments as “problems inbody function or structure such asa significant deviation or loss,”activity limitations as “difficulties anindividual may have in executinga task,” and participation restrictionsas “problems an individual mayexperience in involvement in lifesituations” (Fig 1).7

The ICF also includes the concepts ofcapacity and performance. Capacity isthe individual’s intrinsic ability toperform a task or an action ina standardized environment, whereasperformance is how well theindividual is able to actually performthe task in his or her own real-lifeenvironment.10 These concepts areimportant in understanding the roleof habilitative and rehabilitativetherapies for children withdisabilities, because achievement ofskill requires extensive practiceand must be integrated into thechild’s routine for the successfulenhancement of participation inlife events. In addition, the ICFframework highlights the importanceof a child’s environment on his orher functional outcomes.11 Theenvironment includes not just the

physical world, such as the townwhere the child lives or thetopography of the community, butalso includes the attitudes and valuesof the family, community, and societyat large and the technologies,services, supports, laws, and policieswhere the child lives.12 Access tohealth and therapeutic services, thephysical environment, and socialsupports all affect how well a childwith disabilities functions in his orher daily life.13

CHILDHOOD DISABILITY

A child with a disability has anenvironmentally contextualizedhealth-related limitation in his or herexisting or emerging capacity toperform developmentally appropriateactivities and participate, as desired,in society.14 Childhood disability is onthe rise, especially for children withneurodevelopmental conditions.14–16

A childhood disability may be relatedto congenital or acquired healthconditions and may be temporary,permanent, or progressive in nature.Common examples of healthconditions associated with childhooddisabilities that most pediatric healthcare providers encounter are autism

FIGURE 1ICF. Reprinted with permission from World Health Organization. International Classification ofFunctioning, Disability and Health: Toward a Common Language for Functioning, Disability andHealth. Geneva, Switzerland: World Health Organization; 2002:9.

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spectrum disorder, cerebral palsy,intellectual disability, spina bifida,and acquired conditions such astraumatic brain injury or juvenileidiopathic arthritis. Temporarydisability may be the result ofa serious illness or injury, such asa femur fracture. Examples ofprogressively disabling conditions areDuchenne muscular dystrophy andcystic fibrosis. Disabilities may affectall aspects of daily life or may affecta child only in certain settings orsituations, such as is sometimesthe case for attention-deficit/hyperactivity disorder or whenphysically exerting oneself, as in thecase of exercise-induced asthma andother pulmonary conditions. Somedisabilities are clearly visible, andsome may be less readily apparent.

THERAPEUTIC GOALS

The overarching habilitation andrehabilitation goals for children withdisabilities are to help the childachieve developmentally appropriatefunctional skills, regardless of whetherthese skills existed previously for thechild (rehabilitative) or are to benewly developed (habilitative);prevent maladaptive consequences;mitigate the impact of impairments ofthe body part or structure on thechild’s activities and participation;provide adaptive strategies tominimize the impacts of functionaldeficits; and ensure carryover intoother settings through family training,support, and community integrationstrategies.17 Adaptive strategies caninclude making environmentalmodifications to accommodate thechild, training the child to use assistivetechnologies and other durablemedical equipment such as walkersand wheelchairs, and helping the childdevelop compensatory techniques.Greater access to the physical andsocial worlds through adaptationsprovides children with disabilitiesgreater opportunities for participationand connectedness with others andcan enhance their well-being.18

TYPES OF THERAPY SERVICES

Although children can be supportedby a range of therapies to addresschallenges in daily life, the 3 types oftherapies detailed in this report arephysical therapy, occupationaltherapy, and speech and languagetherapy. Applied behavior analysis isa therapy used frequently in autismspectrum disorder and some otherconditions and is discussed in greatdetail in the American Academy ofPediatrics (AAP) clinical report“Management of Children WithAutism Spectrum Disorders.”19 Alltypes of therapists are valuablemembers of the health care team andmay be involved in care delivery inmultiple settings across the lifecourse. They have important roles indirect treatment but also in familytraining and advocacy.20

Physical therapists address grossmotor skills, strength building,endurance, and fitness. They alsofocus on prevention or reduction ofimpairments to achieve optimalfunctional mobility and participation.They help children move, often withthe use of strategies to prevent theprogression of impairments andthrough the use of adaptiveequipment such as orthotics (braces)and various mobility aids such aswalkers, wheelchairs, and lifts. Fora child with cerebral palsy, forexample, the physical therapistaddresses impairments related tospasticity, weakness, poor posturalcontrol, and lack of coordination. Tominimize activity limitations, thephysical therapist helps the child withwalking skills (among others). Toaddress participation restrictions, thephysical therapist helps the childlearn to navigate a public space suchas the hallways at school.21

Pediatric occupational therapistsaddress upper extremity function,fine motor skills, visual-motorfunction, sensory processing skills,and the occupations or tasks that areexpected of the child.22 These tasks

are referred to as activities of dailyliving (daily tasks such as feeding,eating, dressing, or toileting) andinstrumental activities of daily living(complex tasks such as cooking,shopping, or using a telephone).Occupational therapists are alsoinvolved in identifying the equipmentneeds a child might have to performtasks. To address impairments in thechild with cerebral palsy, for example,the occupational therapist works ongrasping and hand coordination; tohelp with an activity such as dressing,the occupational therapist works withthe child to practice the skill and usean assistive device; and to aid inparticipation, the occupationaltherapist provides strategies that thechild can use in and out of theclassroom such as self-regulationtechniques or taking notes ona keyboard versus on paper.

Speech and language pathologists,also called speech therapists, addresscommunication and cognition.23 Theywork with children with disabilitiesto improve their expressive languageskills verbally or with alternativecommunication techniques. Toaddress speech-related impairmentsassociated with cerebral palsy, forexample, the speech therapist workson oral motor skills to improveenunciation or teaches the child touse an augmentative communicationdevice to successfully communicatewith others and participate in socialinteractions.24 Speech therapists alsoevaluate and treat swallowingproblems.23 Dysphagia is a frequentlyoccurring impairment for childrenwith disabilities, because manydisabling conditions are associatedwith oropharyngeal or esophagealdysfunction. The workup fordysphagia usually includes anevaluation by a speech therapist andmay also include a video fluoroscopicbarium study (often referred to asa cookie swallow) or a fiber-opticendoscopic evaluation of swallow.25

Depending on the etiology andseverity of swallowing dysfunction,

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a multidisciplinary team that mayinclude medical and surgicalspecialists such as pediatricgastroenterologists, otolaryngologists,pulmonologists, or pediatricrehabilitation medicine or complexcare physicians, along with speechtherapists and occupationaltherapists with expertise indisordered feeding, can create andexecute an effective treatment plan.25

Some tertiary care children’shospitals have dedicated feedingand swallowing clinics in whichmultidisciplinary assessments withrecommendation can be provided. Forchildren with complex swallowingand feeding problems, a referral toa specialized clinic may beconsidered.

The services provided by the 3therapy disciplines described aboveoften overlap with each other.Establishing coordinated goals canstrengthen interdisciplinarytreatment synergies.26 For example,both physical and occupationaltherapists address durable medicalequipment needs and help childrengain skills in transitioning from 1position to another. Speech andoccupational therapists oftencollaborate in feeding therapy forchildren with poor oral motor andswallowing skills on the basis of thechild’s needs and the expertise of theproviders involved. In addition,children who use augmentativecommunication or other assistivetechnologies often rely on thecombined expertise of speech andoccupational therapists to determinewhich devices will be most beneficial.There are numerous other examplesof overlap and opportunities forsynergies, but there is potential forduplication of services and paymentrefusal by insurance companies ofwhich pediatric health care providersmay take note. Children may alsoreceive therapy in a group with otherchildren with 1 or more therapydisciplines involved.20 This approach,often called group therapy, usually

targets a specific set of skills that allof the members of the group areworking to achieve. Children may alsoreceive cotreatments in which morethan 1 discipline is involved in thetherapeutic session, but no otherchildren are present.

THERAPY SETTINGS

There are 4 main settings in whicha child with a disability might needa therapy prescription: in thehospital, in the outpatient and/orcommunity setting, in the child’shome, and in school. In the hospitalsetting, the pediatric health careprovider directing care might orderan evaluation and treatments bya therapist. Because the pediatricmedical home provider is usually notthe inpatient attending physician,communications to bridge inpatientto outpatient care plans are essential.In the outpatient setting, a provider’sprescription is typically needed toinitiate an evaluation and treatmentplan by a therapist and for thoseservices to be covered by insurance.All states have some amount of directaccess (an individual can seea therapist without a prescription),most commonly for physicaltherapy.27 Regardless of theprescriber of therapies, the child’sprimary and subspecialty providersmay all be involved in evaluating theimpact of therapy on the child andparticipate in shared decision-makingthat involves collaborating to developgoals and a care plan in a mutuallyrespectful and trusting manner withthe family.1 In the outpatient sector,there is variable access to pediatrictherapists. Children with disabilitiesor developmental delays often haveunmet needs for therapy services,especially if they have inadequatehealth insurance.28–31 Someinsurance plans have limitedcoverage for therapy services andmay have high copays, have highcoinsurance rates, or cap the numberof visits per year. Many familiesreport a health plan problem

(inadequate coverage) as a reason fortheir children’s unmet needs.32–34

When access to therapy is limited, thepediatric health care provider isencouraged to help coordinateservices to the extent possible and tomake referrals to advocacyorganizations that can help familiesnavigate the complex web of serviceproviders.35 In addition, practicesmay find it helpful to keep a list ofagencies and organizations to whichto refer families handy or available ontheir Web site for families to access asneeded. In both the inpatient andoutpatient settings, therapy servicesare based on goals for developingnew skills, regaining lost skills (suchas after an illness injury orintervention), maintaining currentskills at risk for decrement, makingadaptations for functional loss(es),and providing accommodations.

The third location for the provision oftherapy services is in the child’shome. In-home therapies are lesscommon than outpatient or school-based therapies for older childrenand youth but are frequentlyprovided when the child withdisabilities is young, too medicallyfragile to participate in outpatienttherapies, or otherwise homebound.Usually, the physician documents themedical fragility for insurancecompanies to authorize in-hometherapy. One important exception isearly intervention (EI) services. Forchildren 0 to 3 years of age, the homeis the setting for EI services. Infantsand young children who havedisabilities, have developmentaldelays, or are at risk because of theirdiagnosed health conditions may bereferred to EI for evaluation andservices under the Individuals withDisabilities Education Act (IDEA) PartC.36 Although processes and eligibilityvary by state, a developmentalspecialist conducts a globalevaluation of the child and providesplay interventions to promotedevelopment. On the basis of theassessment, the infant or young child


may also receive physical,occupational, speech, and/or visiontherapy in the home. Providingservices in the child’s naturalenvironment has been a part of IDEAPart C since its inception, with goalsto enhance the development ofinfants and toddlers with specialneeds and to support families tointeract and meet the needs of theirchildren.36 A key component of IDEAPart C EI services is an individualizedfamily service plan.37 Providinga medical diagnosis, documenting riskfactors and findings on physicalexamination, and offering aninformed clinical opinion, ascomponents of the medical home, canbe helpful when the child is referredor needs to be reevaluated.36,38 Thevalue of intervening early in a child’slife is well documented39–44;therefore, the pediatric provider isencouraged to routinely evaluatedevelopment in line with AAPrecommendations, provide support tofamilies, collaborate with Part Cprograms,45,46 and advocate on behalfof his or her patients for services. It isimportant to note that state-to-statevariations exist because of eligibilitycriteria differences, including howdevelopmental delay is defined.36

Some infants and toddlers will alsobenefit from traditional outpatienttherapies to supplement EIservices.36 These infants and toddlersfrequently have complex medicalconditions or need outpatient therapyservices to achieve a specific short-term goal. Occasionally, this therapymay be provided to a child carecenter if a specialized arrangement ismade. More information about EIservices is available in the 2013 AAPclinical report “Early Intervention,IDEA Part C Services, and the MedicalHome: Collaboration for Best Practiceand Best Outcomes.”36

The fourth setting for a child witha disability to receive therapies is theschool. IDEA,47 passed in 1975,legislates federal funding to states forEI (through Part C) and special

education services (through PartB).36,37 If a child needs supports orservices to participate in education inthe least restrictive environment,such as speech, physical, oroccupational therapy, these relatedservices are covered by IDEA Part Aand can be incorporated into thechild’s individualized educationprogram (IEP).37 The specificdisabilities codified in IDEA aremental retardation (now calledintellectual disability), hearingimpairments (including deafness),visual impairments (includingblindness), speech and languageimpairments, orthopedicimpairments, serious emotionaldisturbance, autism, traumatic braininjury, other health impairments,specific learning disabilities, deaf-blindness, and multiple disabilities.48

Because IDEA uses a categoricaldefinition of disability for children,some disabilities are, instead, coveredby Section 504 of the RehabilitationAct of 1973, which mandates theprovision of accommodations so thatchildren can receive their educationin the least restrictive environment.37

Section 504 uses a functionaldescriptor, that of a limitation ina major life area such as walking orspeaking, instead of the IDEAcategories of disabilities.37 Atherapist may evaluate the schoolenvironment and the needs foraccommodations for a child’s 504plan irrespective of whether the childis placed in a regular or specialeducation classroom.49 It is notablethat the interpretation of whatconstitutes school-based therapyservices to promote a child’s ability toparticipate academically can varyamong service providers, districts,and states.49 School therapies aredesigned to promote attainment ofa student’s educational goals and areoften more narrowly focused thanoutpatient, medically based therapies.For example, an occupationaltherapist in the school may work onhandwriting, whereas anoccupational therapist in the health

care system addresses many activitiesinvolving the hands, such as teethbrushing; they both address finemotor skills but with differentfunctional tasks. Therefore, somechildren receiving school-basedtherapies also require outpatienttherapy services. Nonetheless, thetherapies provided in schoolfrequently benefit the child outside ofthe school setting. Improved finemotor skills for handwriting canimprove the child’s ability to performother fine motor tasks. Medical homeproviders are encouraged to helpfamilies stay abreast of school-basedinterventions and advocate forservices when warranted. Forfamilies struggling with their schooldistrict regarding academicallynecessary therapy services, a referralto a medical legal partnership, theirstate’s Disability Rights Center, oranother advocacy organization maybe warranted when other venues ofadvocacy have been exhausted.50

The pediatric health care providermay provide a child with a specificdiagnosis, but providing a diagnosisdoes not necessarily mean the childwill qualify for services under IDEA.For a 504 plan, the pediatric healthcare provider also documents themedical diagnosis and, in addition,the associated functional limitation ina major life area. Although not anactual therapy prescription, pediatricmedical providers may also be askedto provide a recommendation aboutadaptive physical education,a protected right under IDEA.51 Formore information about IDEA andspecial education needs, please seethe 2015 AAP clinical report “TheIndividuals with DisabilitiesEducation Act (IDEA) for Childrenwith Special Educational Needs.”37

Regardless of the type of therapy orthe setting in which it is delivered,therapists are key members of themedical home neighborhood.Strategies for communication arerequired to optimize servicecoordination and ensure that children


are receiving all aspects of themedical home.52 This effort isespecially challenging for childrenwith disabilities who often requireextensive care coordination fornumerous specialty services and thusare less likely to receive care ina medical home.28

THERAPEUTIC BENEFITS

The efficacy of therapy services tohelp children gain and/or maintainfunction and provide adaptations iswell documented.53–58 Provision ofa home program with caregivertraining and support is generallyindicated, because carryover ofskills is enhanced by frequentrepetition.59–61 To routinely performnewly achieved skills, children needpractice in their own environment;having the capacity to perform a taskin a structured environment canimprove performance but is notenough to demonstrate achievementof a therapeutic goal.13 Childrenneed to demonstrate that they canroutinely perform the activity in theface of challenges that exist in theirenvironments for successful transferof skills.62 A home program canfurther enhance a child’sparticipation in other structuredactivities that incorporate functionalskills such as dance classes, karate, orschool sports that are appropriatelyadapted for the child with disabilities.The time spent practicing activitieswith real-world carryover is part ofthe critical link between buildingcapacity and performance.13 Animportant role of pediatric providersin optimizing the function of childrenwith disabilities is advocating withfamilies for inclusion in activities thatbest support participation in lifeevents. The pediatric health careprovider is an ideal advocate for earlyinvolvement because of the criticalearly childhood period forneuroplasticity.63,64

Functional improvements are morelikely to occur when the goals of

therapy are clearly delineated andmeasureable,65,66 and goal setting isa central feature of rehabilitation.67

For sustained positive benefits fromtherapeutic interventions, activitiescan be practiced in the child’senvironment and reinforced by theparents or other caregivers.2 Practicein one’s natural environment isessential for success; therefore,parents and/or caregivers areencouraged to practice skill buildingoutside of the therapeutic setting.When a therapeutic intervention isdirected at 1 domain of functioning(body structures and function,activities, or participation) there canbe a “ripple effect” of positiveoutcomes in other domains.13,53,68

For example, strengthening the legscan lead to improved walking, whichcan also be associated with improvedability to navigate and participate inthe classroom. Taking a holisticapproach has clear value and isassociated with improved therapyoutcomes.55,69–72

Although the evidence base for theeffectiveness of various therapies isincreasing, not all therapeuticmodalities and techniques have beenshown to be efficacious, and somehave harmful adverse effects and aretherefore not promoted in lieu ofstandard or evidence-basedtherapies.73–79 For example,hyperbaric oxygen for the treatmentof cerebral palsy has not been shownto be efficacious and is associatedwith harmful adverse effects and istherefore not recommended.78,80,81

Similarly, evidence for the benefits ofpatterning is lacking.81 Treatmentsuccess that is only supported by casereports or anecdotal data and not bycarefully designed research studieswarrants further investigation anddiscussion before prescribing.Families often seek complementaryor alternative treatments and may asktheir pediatric health provider toadvocate for these treatments onbehalf of the child. In thesecircumstances, it is important to

review the evidence and engage ina dialogue with families about thegoals of treatment and how best toachieve them.82 Other treatments andtechniques are a part of a standard ofcare not subject to randomizedcontrolled trials, but newertreatments and techniques requiremore rigorous research beforeconclusions can be drawn about theirefficacy.83–85 Referrals to specialistswith expertise in the varioustherapeutic modalities andtreatments may be considered bymedical home providers to helpdetermine which therapeuticinterventions to prescribe. Pediatricrehabilitation medicine physicians(also known as pediatricphysiatrists), neurodevelopmentalpediatricians, and developmental andbehavioral pediatricians are wellversed in the therapeutic options thatmay not be standard but haveevidence for efficacy.86–95 Thesespecialists tend to be strong medicalhome neighbors because of theirexpertise in coordinating care forchildren with disabilities acrosssettings. In some cases, they may beor may become the medical homeprovider if the family can easilyaccess their services and othercriteria of the medical home can bemet by their practices. Various formsof shared management may beexplored by the primary carephysician and the specialists toensure children with disabilities arereceiving optimal care.

THERAPY DOSING

Determining the appropriate dose oftherapy (how much therapy, howoften, and for how long) remainselusive and largely subjective.13,22,57

Dose is determined by the minuteseach therapy session is, how often itis provided, and for how long (weeks,months, years). Although muchresearch is being conducted, there isnot yet a strong evidence base tosupport any particular dosingstrategy for specific disabilities or


conditions,22 except in unilateralhemiplegic cerebral palsy, for whichhigh-intensity upper extremitytherapy that is activity-based hasbeen shown to improve outcomes toa greater degree than standardtherapy administration (such as oncea week).96 Because of their attentionspans, young children usually do wellwith shorter duration of therapy persession and, therefore, may needmore total sessions or breaks withinsessions. Children with temporarydisabilities may need short-termtherapy to make adaptations to theircondition and recover from it.Children with new-onset disabilities,such as from traumatic injuries,frequently need intense therapyservices shortly after injury often inan inpatient setting with coordinatedmedical and nursing care and thenrequire ongoing therapy on a lessintense schedule to optimize theiroutcomes.97 Children with disabilitiesassociated with chronic healthconditions often need therapy on anongoing basis with variableintensities on the basis of theirindividual functional goals.

Therapies can be dosed in an intensefashion, such as 45 to 60 minutes 2 ormore times a week, especially whena short-term goal is identified anddeemed quickly achievable.21

Similarly, after a medical event ora surgery, some children withdisabilities need intense therapy toregain temporarily lost function andthen can return to their regulartherapy schedule. A commonlydelivered dose of therapy is for 30 to60 minutes per week for an episodeof care, such as during the entireschool year in the case of school-based therapies.98 This schedule isoften used when a child exhibitscontinued progress toward goals andis at risk for a lack of progress orregression if therapy services werehalted.21 Children who arefunctionally stable and have attainedtheir current functional goals mayonly need periodic or intermittent

therapy services.99 This is especiallytrue of older children who may havealready met most of theirdevelopmental milestones. Childrenwith disabilities who use adaptiveequipment well may only need to bechecked on periodically, and whennew equipment is ordered, they mayneed a short course of more intensetherapy for training with the newdevice.21 The process of therapeuticsurveillance is especially important,because children with disabilities areat risk for skill regression or lack ofprogress because of changes in theirhealth or changes in theirenvironments. Reengaging therapyservices quickly can help mitigatedeterioration in participation andquality of life. Similarly, a child ona long-term therapeutic treatmenttherapy program may need to haveservices increased when a newproblem occurs or a goal is identifiedon the basis of a change in functionalstatus or developmentalexpectation.21 This sudden change intherapy needs is often referred to asa burst or an episode of therapy. Forexample, intense gait training may beprescribed when a child is just on thecusp of developing walking skills orto incorporate efficient gait skillswhen gait deviations are present.Strong collaboration between thefamily, the treating therapists,specialists, and the pediatric medicalhome provider helps identify the bestdosing strategies that consider thechild’s health, current functionalstatus, goals, readiness for therapy,response to intervention, andcessation of services, ifwarranted.21,22,100 Pediatricproviders may receive requests fromfamilies for therapies that are notwarranted. In these situations,family-centered, shared decision-making techniques may be used toestablish goals, and then strategiesto achieve these goals can beidentified.1,101 One potential strategyis to make a referral to a specialistwith expertise in the evidencebase for therapeutic interventions

who can work with the family todevelop a goal-directed plan ofcare that addresses concerns, suchas lack of measurable progress butthe need for prevention of furtherimpairment, on which all membersof the team (including family)agree.

THE THERAPY PRESCRIPTION

When a child with functionallimitations needs therapy or whenthere is concern for developmentaldelay, before writing a therapyprescription, it is helpful to reviewpast and current therapy reports (ifany exist), family-identified concerns,and any findings on developmentalscreening or testing in addition to thegoals of therapy and the expectedoutcomes. When prescribing initial orcontinuing therapy services, theprovider is advised to identify thetherapy discipline; the medicalcondition associated with thedisability (or the constellation ofsymptoms and findings if thediagnosis is unknown), whichindicates the medical necessity ofthe treatment; any precautions orrestrictions; the goals of therapy; andthe frequency and duration oftreatment. Additionally, theprescription may include the specifictype or modality of therapy, if 1 isdesired (Fig 2). If the child recentlyhad surgery and is in need of short-term therapy or is restricted fromhis or her usual therapy routine, thesurgeon is often the provider whowrites these prescriptions andmanages restrictions such as weight-bearing precautions. Afterevaluation by the therapist, theprovider may be asked to revise thetherapy prescription on the basis ofthe recommendations of thetherapist who participates in thedevelopment of goals and thetreatment plan. See the cases in TextBoxes 1 and 2 for examples oftherapy prescriptions and theelements of a therapy report.


Providing a high level of detail ina therapy prescription may be beyondthe expertise of many pediatricproviders. Nonetheless, providinga clear prescription to help guide thetherapy is important. Because there isa general lack of evidence for thedosing of therapy, providers areencouraged to consider the amount offunctional improvement anticipated,the urgency of the need for the skilldevelopment, and how quickly thechild is gaining skills. Informationabout the trajectory of disabilityassociated with the condition, theevidence of the value of therapies toimprove functioning, and how theindividual child is expected tobenefit from the interventions is alsoimportant when providing writtenmedical justification. Providers whoprefer not to write detailed therapyprescriptions can consult withpediatric rehabilitation medicinephysicians, neurodevelopmentalpediatricians, developmental andbehavioral pediatricians, and otherspecialists, including physical,occupational, and speech therapistsin their medical community. Thesetypes of providers can be valuable

members of the medical homeneighborhood and can help advancethe care goals set in the child’s careplan with their medical home.Pediatric providers are encouraged,nonetheless, to initiate the processfor such therapies, because access toa specialist may be challenging, andthe value of early engagementwith therapies is well documented.Major professional organizations,existing federal guidelines, and third-party payers all emphasize theimportant role of physicians indetermining the medical necessityfor and ordering of services.2 Thechoice to refer may also be affectedby the severity and complexity of thechild’s disabilities, the family’sdesires, the availability of qualifiedspecialists in the community orregion, and the local or regionalvariations of how therapies aredelivered. Pediatric medical homeproviders remain the locus ofcommunication and coordinationof services.35

Dealing With Insurance Denials

The pediatric health care provider islikely all too familiar with denials for

coverage of therapy services frominsurance companies. Whenaddressing a denial, either over thephone or in writing, it behooves theprovider to have some key pieces ofinformation available to explain whythe prescribed service is medicallynecessary: the diagnosis or diagnosesfor which the service is needed, whatthe service is expected to accomplish(ie, how the service is reasonablylikely to address the disablingcondition), that there is not anequally effective less costly option,and other pertinent medical history.Pediatric health care providers mayalso want to familiarize themselveswith the Early and Periodic Screening,Diagnosis, and Treatment (EPSDT)standards, because a majority ofchildren with long-term disabilitiesare covered by Medicaid.28,103,104 TheEPSDT amendments to Medicaiddirect coverage of “early andperiodic” screening and diagnosticservices to identify defects andchronic conditions in addition toproviding coverage of health care andtreatments to “correct or ameliorate”such conditions and defects.104 Thisencompasses treatments thatimprove health outcomes as well astreatments that enable children withdisabilities to achieve and maintainfunction.104 Specifically, physical,occupational, and/or speech therapyare mandated pursuant to 42 US Code1396d(a)(7) and/or 1396d(a)(11). Asa result, coverage for therapy servicesis frequently better under Medicaidthan under commercial insuranceplans that limit treatments.103 Foradditional reading on EPSDT, pleasesee “EPSDT - A Guide for States:Coverage in the Medicaid Benefit forChildren and Adolescents” (https://www.medicaid.gov/medicaid/benefits/downloads/epsdt_coverage_guide.pdf).

Beyond the Therapy Prescription

The primary care medical homeengages in the coordination ofservices for children with disabilitiesin school, hospital, and community

FIGURE 2Sample therapy prescription. DOB, date of birth.


https://www.medicaid.gov/medicaid/benefits/downloads/epsdt_coverage_guide.pdf




settings.35 Regular communicationbetween the child’s care team(parents and/or caregivers,educators, therapists, subspecialists,and medical home providers)includes updates on the child’sfunctional status, the achievement oftherapy goals, identification of newgoals, the planned cessation oftherapy services when appropriate,

and family functioning and concerns.This is especially important whenchildren receive services in multiplesettings simultaneously from multipleproviders or have othervulnerabilities such as being in fostercare. In addition, when the child’smedical or functional status changesor when other circumstances warranta change in treatment, the prescribing

provider may need to alert thetherapist(s) and delineate newprecautions or goals. Whena therapist notes a functional declinethat is unanticipated, he or she canrefer back to the pediatric healthcare provider who is able toevaluate the child and seek todetermine the etiology for the declineand discuss findings with the family.

BOX 1 CASE EXAMPLE OF A CHILD WITH CEREBRAL PALSY

Liam is an 11-year-old boy with spastic diplegia, a type of cerebral palsy that mainly affects the lower extremities, who has recently movedwith his family from another state and is establishing care in your primary care practice. He wears braces on his lower legs and usesforearm crutches to walk, although he can walk short distances without his crutches at home. He is in the fifth grade and rides the bus withhis older sister, who makes sure he gets on and off the bus safely, because he is a little impulsive and falls frequently. His mom performs hislower body dressing for him because they are often in a rush in the mornings before school. She reports that he could do all of his dressingexcept getting his shoes on over his braces if he had to. At school, he placed in the advanced reading group but struggles with visualperceptual tasks and has “terrible handwriting,” according to his mother. The IEP meeting is next week, and prescriptions are requested bythe school. The mom also wants to get him involved in therapies outside of school. Before they moved, he received physical therapy oncea week and occupational therapy twice a month.

Liam has several therapeutic needs. The most pressing issue is his IEP. On the prescription for therapies at school, you document hisdiagnosis (spastic diplegic cerebral palsy) and the types of therapies to be provided at school (physical and occupational), the reasons heneeds these therapies (mobility, safety, fine motor skills, and visual perceptual skills), the duration of therapy (entire school year), and thefrequency (1–2 times per week). You also write a prescription for adaptive physical education so that the school’s physical therapist can workwith the gym teacher to create a safe and inclusive program for him.

To address Liam’s outpatient therapy needs, you prescribe the following:

1. Physical therapy: evaluation and treatment of spastic diplegia, duration 6 months, frequency 1 to 2 times per week to address strengthtraining, ambulation longer distances with Lofstrand crutches and gross motor skills, safety awareness (especially for getting on and off theschool bus), equipment needs, stretching for spasticity management, and family training for carryover in the home environment. Norestrictions.

2. Occupational therapy: evaluation and treatment of spastic diplegia, duration 6 months, frequency 1 to 2 times per week to address finemotor skills, activities of daily living (especially dressing), safety awareness, visual perceptual skills, and family training for carryover in thehome environment. No restrictions.

After Liam’s evaluations by the physical and occupational therapists, you receive a letter from each of them with information about theevaluations, the goals that were set, and some changes that they request. Specifically, the physical therapist thinks that Liam’s balance isreally impairing his progress toward ambulation without crutches. She recommends doing once-a-week hippotherapy to strengthen his coreand improve his balance and would like for you to write the prescription. The occupational therapists noted that like many children withspastic diplegia, Liam has poor fine motor skills, which have really impacted his handwriting. She recommends an intense handwriting grouptherapy program that meets 3 afternoons a week for 2 months. She needs a special prescription for this program. After discussing therecommendations with Liam’s mother, you write the prescriptions and await feedback. A few weeks later, your nurse manager reports thatthe hippotherapy you prescribed has been denied by Liam’s insurance. The nurse shares the draft of the letter of medical justification towhich you add the evidence in support of the use of hippotherapy in children with cerebral palsy and reiterate the specific goals (corestrengthening and balance) along with the intended outcome of improved ambulation without an assistive device.102 The denial is overturned.Three months later, you receive interim therapy reports from Liam’s outpatient physical and occupational therapists. Each of these reportsdetails the initial skill level Liam had when he started therapy, the specific goals they set with Liam and his mother, his achievements and hiscurrent status with a recommendation to continue the services to address existing and newly developed goals. The occupational therapistspoke to his physical therapist about shoes that would be easier for Liam to don over his orthotics because he had not been successful atachieving his lower body dressing goal with occupational therapy. The physical therapist sent a fax to your office requesting a prescriptionfor orthotic-containing shoes. At Liam’s follow-up visit, his mom indicates that she is so proud of him that he can stand without holding on toanything for nearly 1 minute and that he can get himself dressed in the morning if she makes sure he has enough time before the bus comes.She also reports that it seems easier for him to make friends because he can usually keep up with other kids if activities are modified. Youagree that he seems to be making great progress, as also documented in summary reports from his therapists.

BOX 1 CASE EXAMPLE OF A CHILD WITH CEREBRAL PALSY

Liam is an 11-year-old boy with spastic diplegia, a type of cerebral palsy that mainly affects the lower extremities, who has recently movedwith his family from another state and is establishing care in your primary care practice. He wears braces on his lower legs and usesforearm crutches to walk, although he can walk short distances without his crutches at home. He is in the fifth grade and rides the bus withhis older sister, who makes sure he gets on and off the bus safely, because he is a little impulsive and falls frequently. His mom performs hislower body dressing for him because they are often in a rush in the mornings before school. She reports that he could do all of his dressingexcept getting his shoes on over his braces if he had to. At school, he placed in the advanced reading group but struggles with visualperceptual tasks and has “terrible handwriting,” according to his mother. The IEP meeting is next week, and prescriptions are requested bythe school. The mom also wants to get him involved in therapies outside of school. Before they moved, he received physical therapy oncea week and occupational therapy twice a month.

Liam has several therapeutic needs. The most pressing issue is his IEP. On the prescription for therapies at school, you document hisdiagnosis (spastic diplegic cerebral palsy) and the types of therapies to be provided at school (physical and occupational), the reasons heneeds these therapies (mobility, safety, fine motor skills, and visual perceptual skills), the duration of therapy (entire school year), and thefrequency (1–2 times per week). You also write a prescription for adaptive physical education so that the school’s physical therapist can workwith the gym teacher to create a safe and inclusive program for him.

To address Liam’s outpatient therapy needs, you prescribe the following:

1. Physical therapy: evaluation and treatment of spastic diplegia, duration 6 months, frequency 1 to 2 times per week to address strengthtraining, ambulation longer distances with Lofstrand crutches and gross motor skills, safety awareness (especially for getting on and off theschool bus), equipment needs, stretching for spasticity management, and family training for carryover in the home environment. Norestrictions.

2. Occupational therapy: evaluation and treatment of spastic diplegia, duration 6 months, frequency 1 to 2 times per week to address finemotor skills, activities of daily living (especially dressing), safety awareness, visual perceptual skills, and family training for carryover in thehome environment. No restrictions.

After Liam’s evaluations by the physical and occupational therapists, you receive a letter from each of them with information about theevaluations, the goals that were set, and some changes that they request. Specifically, the physical therapist thinks that Liam’s balance isreally impairing his progress toward ambulation without crutches. She recommends doing once-a-week hippotherapy to strengthen his coreand improve his balance and would like for you to write the prescription. The occupational therapists noted that like many children withspastic diplegia, Liam has poor fine motor skills, which have really impacted his handwriting. She recommends an intense handwriting grouptherapy program that meets 3 afternoons a week for 2 months. She needs a special prescription for this program. After discussing therecommendations with Liam’s mother, you write the prescriptions and await feedback. A few weeks later, your nurse manager reports thatthe hippotherapy you prescribed has been denied by Liam’s insurance. The nurse shares the draft of the letter of medical justification towhich you add the evidence in support of the use of hippotherapy in children with cerebral palsy and reiterate the specific goals (corestrengthening and balance) along with the intended outcome of improved ambulation without an assistive device.102 The denial is overturned.Three months later, you receive interim therapy reports from Liam’s outpatient physical and occupational therapists. Each of these reportsdetails the initial skill level Liam had when he started therapy, the specific goals they set with Liam and his mother, his achievements and hiscurrent status with a recommendation to continue the services to address existing and newly developed goals. The occupational therapistspoke to his physical therapist about shoes that would be easier for Liam to don over his orthotics because he had not been successful atachieving his lower body dressing goal with occupational therapy. The physical therapist sent a fax to your office requesting a prescriptionfor orthotic-containing shoes. At Liam’s follow-up visit, his mom indicates that she is so proud of him that he can stand without holding on toanything for nearly 1 minute and that he can get himself dressed in the morning if she makes sure he has enough time before the bus comes.She also reports that it seems easier for him to make friends because he can usually keep up with other kids if activities are modified. Youagree that he seems to be making great progress, as also documented in summary reports from his therapists.


Coordinating care that is organizedaround patient- and family-centeredgoals with clear communicationbetween the health careteam members is the goal to helpoptimize the health, function, andwell-being of children withdisabilities.

LEAD AUTHORS

Amy J. Houtrow, MD, PhD, MPH, FAAPNancy A. Murphy, MD, FAAP

COUNCIL ON CHILDREN WITH DISABILITIESEXECUTIVE COMMITTEE, 2017–2018

Dennis Z. Kuo, MD, MHS, FAAP, ChairpersonSusan Apkon, MD, FAAPTimothy J. Brei, MD, FAAPLynn F. Davidson, MD, FAAPBeth Ellen Davis, MD, MPH, FAAPKathryn A. Ellerbeck, MD, FAAPSusan L. Hyman, MD, FAAPMary O’Connor Leppert, MD, FAAP

Garey H. Noritz, MD, FAAPChristopher J. Stille, MD, MPH, FAAPLarry Yin, MD, MSPH, FAAP

FORMER COUNCIL ON CHILDREN WITHDISABILITIES EXECUTIVE COMMITTEEMEMBERS

Amy J. Houtrow, MD, PhD, MPH, FAAPNancy Murphy, MD, FAAPKenneth W. Norwood, Jr, MD, FAAP,Immediate Past Chairperson

LIAISONS

Peter J. Smith, MD, MA, FAAP – Section onDevelopmental and Behavioral PediatricsEdwin Simpser, MD, FAAP – Section onHome CareGeorgina Peacock, MD, MPH, FAAP – Centersfor Disease Control and PreventionMarie Y. Mann, MD, MPH, FAAP – Maternaland Child Health BureauCara Coleman, JD, MPH – Family Voices

STAFF

Alex Kuznetsov, RD

ABBREVIATIONS

AAP: American Academy ofPediatrics

EI: early interventionEPSDT: Early and Periodic

Screening, Diagnosis, andTreatment

ICD: International Classification ofDiseases

ICF: International Classification ofFunctioning, Disability andHealth

IDEA: Individuals with DisabilitiesEducation Act

IEP: individualized educationprogram

WHO: World Health Organization

PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).

Copyright © 2019 by the American Academy of Pediatrics

FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.

FUNDING: No external funding.

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

BOX 2 CASE EXAMPLE OF A CHILD WITH LANGUAGE DELAY

Sophia is a 2-year-old who was born at 32 weeks’ gestation who has yet to say any words. At an ill visit for diarrhea, Sophia’s mother sharesher worries about her lack of expressive communication. You reviewed her history, which included a normal hearing screen in the NICU, noconcerns on her 9-month well-child visit, and no 18-month developmental surveillance because the family had moved away and then returnedto your practice. You conduct an examination that reveals that Sophia responds to her name and other noises, is happy and playful, seems tounderstand information and can follow commands, has normal gross motor and fine motor skills, and babbles, but mostly communicates bypointing and gesturing. After confirming normal hearing on audiology examination, you diagnose Sophia with an isolated speech delay. Yourefer the family to EI services and also to outpatient speech therapy. In your prescription for outpatient speech therapy, you write herdiagnosis as developmental disorder of speech and language and request therapy 2 to 3 times per week, 30 minutes per session for12 weeks to address her expressive communication skills. At reevaluation 3 months later, Sophia’s expressive speech is much improved. EIservices are once a week, and the outpatient speech therapist recommends decreasing the frequency of speech therapy to once a week,because most of her goals have been met. You write a new prescription for ongoing outpatient speech therapy on the basis of therecommendations of the speech therapist and your discussion with Sophia’s mother.

At Sophia’s 3-year well-child visit, Sophia’s mother reports that EI services stopped a few months ago and that the outpatient speech therapisthad tested Sophia and that her expressive language skills were in the low-normal range. Her mother reports that she speaks spontaneouslywith other children during play and is able to “get her point across” with adults using words. In reviewing the report from the speechtherapist, you agree that services are no longer warranted, but Sophia’s mother wants her to continue to get speech therapy until she testsinto the midnormal range. You recognize that ongoing speech therapy services are not medically justified, so you engage in a shareddecision-making process to implement a home program for continued skill development and practice, an approach to monitoring of Sophia’slanguage skills and development closely, and a formal evaluation of her communication skills when entering school or sooner, should therebe any concerns regarding her development.

BOX 2 CASE EXAMPLE OF A CHILD WITH LANGUAGE DELAY

Sophia is a 2-year-old who was born at 32 weeks’ gestation who has yet to say any words. At an ill visit for diarrhea, Sophia’s mother sharesher worries about her lack of expressive communication. You reviewed her history, which included a normal hearing screen in the NICU, noconcerns on her 9-month well-child visit, and no 18-month developmental surveillance because the family had moved away and then returnedto your practice. You conduct an examination that reveals that Sophia responds to her name and other noises, is happy and playful, seems tounderstand information and can follow commands, has normal gross motor and fine motor skills, and babbles, but mostly communicates bypointing and gesturing. After confirming normal hearing on audiology examination, you diagnose Sophia with an isolated speech delay. Yourefer the family to EI services and also to outpatient speech therapy. In your prescription for outpatient speech therapy, you write herdiagnosis as developmental disorder of speech and language and request therapy 2 to 3 times per week, 30 minutes per session for12 weeks to address her expressive communication skills. At reevaluation 3 months later, Sophia’s expressive speech is much improved. EIservices are once a week, and the outpatient speech therapist recommends decreasing the frequency of speech therapy to once a week,because most of her goals have been met. You write a new prescription for ongoing outpatient speech therapy on the basis of therecommendations of the speech therapist and your discussion with Sophia’s mother.

At Sophia’s 3-year well-child visit, Sophia’s mother reports that EI services stopped a few months ago and that the outpatient speech therapisthad tested Sophia and that her expressive language skills were in the low-normal range. Her mother reports that she speaks spontaneouslywith other children during play and is able to “get her point across” with adults using words. In reviewing the report from the speechtherapist, you agree that services are no longer warranted, but Sophia’s mother wants her to continue to get speech therapy until she testsinto the midnormal range. You recognize that ongoing speech therapy services are not medically justified, so you engage in a shareddecision-making process to implement a home program for continued skill development and practice, an approach to monitoring of Sophia’slanguage skills and development closely, and a formal evaluation of her communication skills when entering school or sooner, should therebe any concerns regarding her development.


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