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Specific learning disorders in children: Role of the primary care provider

Specific learning disorders in children: Role of the primary care provider
Author:
L Erik von Hahn, MD
Section Editor:
Robert G Voigt, MD, FAAP
Deputy Editor:
Diane Blake, MD
Literature review current through: Jan 2024.
This topic last updated: Mar 09, 2023.

INTRODUCTION — The evaluation and management of learning disorders (LDs) is generally the responsibility of the school system, but it requires input from multiple professionals, including the primary care provider.

The role of the primary care provider in the evaluation and management of LD in children will be discussed here. The clinical features, evaluation, and educational management of LDs and laws pertaining to specific learning disorders in the United States are discussed separately.

(See "Specific learning disorders in children: Clinical features".)

(See "Specific learning disorders in children: Evaluation".)

(See "Specific learning disorders in children: Educational management".)

(See "Definitions of specific learning disorder and laws pertaining to learning disorders in the United States".)

ROLE OF THE PRIMARY CARE PROVIDER — Routine supervision of a child's educational status, including advocacy to ensure the child's access to quality educational practices, is an important component of health supervision [1]. Educational status affects long-term health [2]. Factors associated with positive health outcomes include attending a high-quality preschool, social-emotional status in elementary school, and completion of high school [3]. Intervention programs offered before five years of age appear to be particularly important predictors of future health status [4].

Although the diagnosis of learning disorder (LD) usually is made by educators and/or psychologists through psychometric testing, the primary care provider's expertise and unique clinical perspective play a vital role in the identification and evaluation of children with LD.

The main responsibilities of the primary care provider are to assist in the identification of LD, ensure management of LD, evaluate and address co-occurring conditions (eg, attention deficit hyperactivity disorder, sleep problems, seizures), and provide care coordination [1]. Once LD is identified, the primary care provider should discuss the causes and interventions for LD and describe common co-occurring conditions with the family and provide information about LD and co-occurring conditions. (See 'Early identification' below and 'Medical evaluation' below and 'Roles in management' below.)

Primary care providers who have a longstanding relationship with the child and family may be better able to help the family articulate their concerns than educators or clinicians with whom the family is less familiar, facilitating identification of students with LD. Primary care clinicians also can provide information to the school about psychosocial, cultural, medical, or environmental factors that affect the child's ability to learn, reinforcing the need for formal evaluation by the school [5]. After the evaluation is completed, the primary care provider can help the parents interpret the evaluation and negotiate the special education system. The primary care provider also can help the family understand LD and its co-occurring conditions so that they can seek appropriate services. (See 'Communicating with the school team' below and 'Education and counseling' below.)

The primary care provider has several secondary roles in the management of children with LD who receive special services at school. These include providing information about and/or referrals to community agencies that provide treatment for the disorder and co-occurring conditions, advocating for the child's rights and needs at school, serving as a mediator between the family and the school team when there are disagreements, and assisting the school team in the delivery of services. (See 'Care coordination' below and 'Advocacy and support' below and 'Intermediary' below.)

EARLY IDENTIFICATION — Early identification of learning disorders (LDs) is necessary to provide appropriate interventions [6-8]. Pediatric clinicians should have a low threshold for considering LD in children who are at risk for LD and children who have problems at school, because early recognition and intervention can affect ultimate outcome. The primary care provider is especially critical when the child's learning problems are overlooked by the family and/or school personnel.

LD should be considered if (see "Specific learning disorders in children: Clinical features", section on 'Risk factors'):

There is parental concern about any school-related problem (eg, behavioral regulation, poor peer interactions, or learning problems in reading (table 1), writing (table 2), or math (table 3))

The child's report card indicates learning difficulty; the primary care provider can focus on reading, writing, and math skills in particular

There is a family history of learning problems

The child has a behavioral/mental health diagnosis

The child has a history of developmental delay

The child has a neurologic condition or history of central nervous system insult (eg, seizure disorders, neurofibromatosis, tuberous sclerosis complex)

The child has a genetic condition with increased risk for either language-based LDs (eg, Klinefelter syndrome [XXY]) or nonverbal LDs (eg, Turner syndrome [XO])

The child was born preterm, exposed to alcohol or other substances in utero, or experienced other perinatal complications

MEDICAL EVALUATION — Learning disorder (LD) does not usually have a defined medical cause. The goal of the medical evaluation is to identify medical, neurologic, and/or behavioral conditions that may be related to the LD or co-occur with the LD [8].

History — The developmental, educational, and learning histories (table 4) are the most important aspects of the medical evaluation, particularly if the child has been followed consistently by the primary care provider and the provider is familiar with the child's medical conditions. If the child is known to have a co-occurring condition associated with learning problems, the provider should ask about learning and school problems during regularly scheduled well-child visits [1,9]. It is important to make sure that the child has attended school regularly before initiating an evaluation for LD.

The chief complaint of the parent or child usually suggests the problem area [10]. The primary care provider should use standard descriptors to further define the type of learning problem (eg, the time that the learning problem was first identified, any improvement or worsening of the problem over time, factors that improved or aggravated the learning problem). Students with learning problems often have impairments in more than one area, including vision, hearing, motor skills, attention and task completion skills, language skills, and social skills. The pediatric clinician should ask about problems in these areas, in addition to asking about problems in formal learning at school (eg, problems in reading (table 1), writing (table 2), or math (table 3)).

The child's performance at school can be measured by report cards, teacher comments, parent observations, and history of academic progress over time. The author of this topic review asks the classroom teacher to complete a detailed questionnaire about the student's school performance that includes a narrative description, a summary of academic and behavioral performance as being at or below grade level, and the National Institute for Children's Health Quality Teacher Vanderbilt Assessment Scale. Similar teacher forms are commonly available from local developmental-behavioral pediatrics clinics, or from a neuropsychology clinic, and are used as part of their intake procedure. Completion of these forms can help the primary care clinician identify learning concerns and can prepare the family for referral to specialist care if needed.

Several other types of questionnaires can be completed by the classroom teacher to provide information about classroom performance and co-occurring conditions [8]. Examples of these include:

The Vanderbilt teacher questionnaire for attention deficit hyperactivity disorder (available free of charge through the National Institute for Children's Health Quality)

Commercially developed scales available for a fee, including:

Conners 4th Edition [11]

Child Behavior Checklist (2001) [12]

Behavior Assessment System for Children, third edition [13]

The medical, family, social, developmental, behavioral, and psychiatric histories should be recorded (table 4). The age of attainment of language milestones is particularly important (table 5). Past developmental delays can be associated with current learning problems. The likelihood of LD increases if learning failure is associated with certain medical, developmental, and familial factors (eg, prematurity, prenatal exposure to alcohol, family history of LD, poverty). Consideration of these factors also informs the treatment plan [1,9,10]. (See "Specific learning disorders in children: Clinical features", section on 'Risk factors'.)

The child's abilities and strengths should be identified, along with their disabilities. One way to access this information is to ask what activities the child enjoys doing or believes themself to be good at doing. The child's interests and skills are useful in the development of a treatment plan.

Examination — Although the physical examination of most children with LD is normal, important aspects of the examination include general observations and appearance, growth parameters, examination of the skin and genitalia, assessment of hearing and vision, and neurologic examination (table 6). The child's participation in the history-taking and the physical examination provides an opportunity to review their capacity to follow instructions and to use language to answer questions and participate in a conversation.

Abnormalities on physical examination may suggest a particular neurologic or genetic condition that is associated with learning problems (eg, neurofibromatosis, tuberous sclerosis complex, Klinefelter syndrome). However, children with these conditions typically do not present with learning failure as the first sign or symptom.

Dysmorphic features (ie, major or minor malformations (table 7A-B)) may suggest a genetic or congenital condition that is associated with learning problems. The incidence of minor malformations is increased among children with LD [14]. However, no specific pattern of minor anomalies is pathognomonic for LD [15]. (See "Congenital anomalies: Epidemiology, types, and patterns", section on 'Malformations'.)

Informal testing — The pediatric clinician can perform informal testing to review developmental functions and identify specific areas for further testing by incorporating routine questions about specific learning skills, as outlined below (table 8) [16]. Informal testing can also help in assessing basic knowledge and mental status. A formal battery of psychoeducational tests is usually administered by a psychologist or educator, but some primary care providers may use developmental assessment tools to add to the information that they have gathered. (See "Specific learning disorders in children: Evaluation", section on 'Psychometric tests'.)

Successful learning has many components. When LD is suspected, the primary care provider should focus on the specific learning skills and learning deficits that are characteristic of LD (table 9). However, other behaviors or learning difficulties, such as poor attention span or problems socializing, may be the signal for LD and/or may co-occur with the LD.

Structured developmental tasks – Participation in structured developmental tasks (eg, describing a picture from a book or describing the story line from a series of pictures) can help the pediatric provider look more closely at the child's:

Capacity to focus attention.

Language and memory function (ability to understand, remember, and carry out instructions).

Expressive language skills (ability to use vocabulary and grammar correctly).

Pragmatic language skills (use of nonverbal communication skills such as facial expressions, gestures, or changes in tone of voice; ability to carry on a conversation by providing appropriate responses and by showing appropriate turn-taking; being able to sequence sentences into a logical narrative).

Coordination skills.

Capacity for specific tasks of reading (table 1), writing (table 2), or math (table 3).

Reading and writing skills – The pediatric provider can incorporate some routine questions about phonologic skills, reading, and language skills during office encounters with young children to assess language and literacy skills. Clues to reading impairment in early childhood are provided in the table (table 10):

Phonologic awareness skills – Preschool and kindergarten children should be able to identify and provide words that rhyme ("Tell me what rhymes with 'mat.'").

Grade one children should be able to delete the beginning sound of a word ("Say 'fireman' without saying 'man.'"; "If you take away the 'h' sound from 'hat,' what do you get?") and replace the beginning sound of a word with a new letter ("If you take the 't' sound in 'take' and replace it with an 'm,' what do you get?").

Early phonics skills – Kindergarten children should be able to identify letters and some of their sounds (sound-symbol relationships or phonics skills). By the end of kindergarten, children should be able to read a list of 10 to 20 sight words. They should know all of the letters of the alphabet and their sounds [17].

By the end of grade 1, students should be able to read (decode) novel three- and four-letter words. Phonics is largely mastered by the end of grade 2, with full mastery by the middle of grade 3 [17]. In grade 2, children can show phonetic spelling skills, producing phonetically correct words even if the words are spelled incorrectly.

Late phonics skills – By the end of grade 3, all phonics skills in the English language should be mastered and the child should be able to read (decode) fluently/smoothly. The child should also be able to read with comprehension [17]. By the end of grade 3, spelling errors are less and less common in children who are learning successfully.

Language skills – After age 4, articulation should be 100 percent intelligible. By kindergarten or grade 1, children should speak English fluently and without grammatical errors. Although grammatical errors amongst children exposed to another language at home can occur after this age, especially if exposed to incorrectly spoken English, children exposed to another language at home typically should have mastered English by this age as well. Review of language skills is especially useful because language difficulty typically precedes problems in reading and writing.

Inability to demonstrate the language and literacy skills listed above may signal reading/writing disorders (table 1 and table 2). Difficulties with pronunciation across a variety of speech sounds, particularly those that affect intelligibility after age 4, may be a sign of impairment in speech/sound disorder, language impairment, or impairment of phonologic awareness. Such difficulties warrant documentation and monitoring for improvement or resolution. They are known to affect reading and spelling skills. Laborious and slow reading or writing, poor spelling, and/or the need for extra time in reading and/or to take tests may indicate a reading disorder (table 11A-B). The pediatric clinician should empower the family by teaching them about potential signs of language or reading difficulty. They should encourage the family to speak with the classroom teacher and discover if their child's language (pronunciation, grammar), reading, and spelling difficulties are expected or not expected for the child's age, grade, and level of educational exposure. The primary care provider should have a high suspicion for a reading disorder and a low threshold for referral. (See "Reading difficulty in children: Clinical features and evaluation", section on 'Clinical features'.)

Math skills – Routine questions about math skills may facilitate early identification of math LD. Early math skills include the following (table 3):

Number sense – By kindergarten, children understand that things can be counted and that some numbers are bigger than others. They understand concepts such as "more/less" and "bigger/smaller." They know that numbers are counted in a specific order.

Math facts or math calculations – In grade 1, children know that numbers can be added and learn specific addition and subtraction procedures. By the end of grade 2, they understand many math facts related to addition and subtraction, and can recite many of them by memorization. Multiplication and division skills are learned later.

Math fluency – Math fluency refers to the quick computation or the automatic retrieval of math facts. Math fluency is variable and is best assessed through formal measures.

Ancillary medical testing — The laboratory evaluation in children being evaluated for LD is directed by findings from the history and physical examination. Routine laboratory testing is not necessary.

Children being evaluated for LD should undergo vision and hearing assessment. Vision and/or hearing impairment can contribute to learning difficulty. (See "Vision screening and assessment in infants and children", section on 'Vision screening' and "Hearing loss in children: Screening and evaluation", section on 'Screening for hearing loss in children'.)

ROLES IN MANAGEMENT — Although most interventions for learning disorders (LDs) occur in the school setting, the primary care provider has several roles in management, described in the sections below.

Requesting evaluation in the school district

When to request an evaluation – When there are concerns about the child's learning, the primary care clinician should assist and support parents in submission of a formal request for evaluation by the child's school district (table 12).

The Individuals with Disabilities Education Act (IDEA) specifically prohibits schools from requiring parents to seek the use of medications (eg, stimulants for symptoms of attention deficit hyperactivity disorder [ADHD]) before evaluations or services are provided by the school [18].

How to request the evaluation – Although parents who are concerned about their child's learning can request an evaluation without involving the primary care clinician, involvement of the primary care clinician may help to clarify the reasons for the request. (See 'Communicating with the school team' below.)

Written requests (eg, a templated letter) help to ensure that the school follows procedural (legal) safeguards related to the timeliness of testing. The signature of the primary care provider added to the parents' signatures may strengthen the request (form 1).

The request should include specific reasons why the testing is being requested (eg, clinician's observations of lower than expected language skills, phonics skills, and/or math skills ) and the type(s) of evaluation requested. The school is more likely to grant the request for testing if there is evidence of a learning or classroom participation problem. Providing detailed information about the caregiver's or clinician's concerns and requesting specific types of testing may facilitate more timely and appropriate services for the student.

The author's clinic routinely requests evaluations for intelligence (IQ), educational achievement, and speech/language skills as the baseline. These are the basic evaluations necessary to understand a student's learning and service needs.

Additional evaluations are requested as indicated and may include:

For children with emotional and behavioral disturbances – Behavioral rating scales (eg, Behavioral Assessment System for Children [BASC], Behavioral Rating Inventory of Executive functions [BRIEF], Child Behavior Checklist [CBCL])

For children with gross or fine motor impairments (eg, decreased muscle tone, problems with handwriting, seating problems) – Occupational therapy evaluation and physical therapy evaluation

For children with known global impairments – Adaptive behavior rating scales

What to expect – Schools have a certain number of days to respond to a request for testing (different states have different timeframes). The school may decline the request for the evaluation or agree to do the evaluation.

School declines the request for evaluation – Schools have a legal right to decline the parents' request for testing (eg, if they do not think testing is warranted). However, the school must respond to the parents request and provide data to show that the testing is not warranted (ie, that the child is learning successfully) [19]. Parents whose requests for evaluation have been declined may request additional guidance from the pediatric clinician or may turn to their state board of education for advice or support.

School agrees to do the evaluation – When the school agrees to complete the evaluation, it provides a proposal for the evaluation for parental consent.

If the family accepts the school's proposal for the evaluation, they must sign the proposal (consent) for the school to proceed [19]. In general, schools have up to 60 calendar days to complete the evaluation and hold an eligibility meeting, but there is state-to-state variability in this timeline. The parents should ask about the timeline and set a date in advance to review the completed testing results.

After the evaluation, the school team meets with the family to review test results and discuss their proposal to address the child's learning problems (eg, an individualized education program [IEP], accommodation plan, or extra supports as part of general education). The family may accept, partially accept, or reject the school's proposal (table 12). (See 'The individualized education program' below.)

Communicating with the school team — Direct communication between the pediatric provider and the school team helps to ensure that the team has the necessary information to best meet the needs of the child in the educational setting and that everyone's questions and concerns are addressed [20]. A written communication to request an evaluation or to request services sometimes increases the likelihood that the school will take action. However, prior verbal communication may obviate the need for written communication, especially when the provider helps the school team to understand the family's needs or concerns. Written documentation from the provider that follows a conversation with a member of the school team is generally more helpful to and viewed more positively by the school team than documentation that was not informed by a previous conversation. Effective communication with school teams improves with practice. It can take multiple communications regarding multiple students before the pediatric clinician understands local school practices and legal obligations.

All communication between the primary care provider and members of the school team should occur with the knowledge and agreement of the family, with written consent on file for exchange of personal health information and public education records [8,21,22].

The type of information the pediatric clinician should share with the school includes:

Medical or mental health diagnoses that the school team may not be able to make on its own (eg, epilepsy, ADHD, autism spectrum disorder [ASD]) and information about the effects of the condition(s) and/or its treatment(s) on the child's ability to learn. Many school professionals have concerns about inadvertently harming the student through action or inaction related to the student's medical or mental health conditions. The pediatric clinician can help in this regard by determining whether the school team has such concerns.

Information about medications and medical interventions that must be administered at school. Providing this information helps to ensure that medications and interventions are administered appropriately. Subspecialists may need to provide information for certain interventions (eg, orthotic devices, ventilators).

The American Academy of Pediatrics provides specific guidance for the administration of medication in school [23].

Information about the potential effects of the student's medical condition(s) or treatment(s) on the student's performance in the classroom or other school-related activities. This information may need to be very explicit for the student to receive the necessary evaluations and/or services. The functional impairment (as assessed by the school team), rather than the diagnosis, determines whether services are provided [24]. (See 'Service delivery decisions' below.)

The pediatric clinician should take into consideration how the medical condition affects the student's capacity to:

Navigate the school environment

Remain seated for the duration of the school day

Follow school rules and classroom routines

Participate in classroom discussions

Focus

Form relationships with peers

Complete classroom work and homework

If the pediatric clinician is uncertain about how to describe the functional impact of the child's condition on their performance at school or to make recommendations that reflect all of the student's needs, the clinician can ask the classroom teacher to describe their concerns about the student's performance in class or to complete a questionnaire about school function before the clinician estimates how the student's condition may affect classroom performance.

The pediatric clinician's recommendations for testing (eg, screening evaluation for mental health conditions, speech/language testing, educational evaluation).

Pediatric clinicians who have prior knowledge of the types of services that students need can share this information with the school team. As an example, the clinician could write: "Based on the student's performance difficulties, it is likely that they would benefit from X service."

The pediatric clinician's recommendations are more likely to be seriously considered by the school if the clinician has information about the child's performance at school. This information can be obtained through a detailed teacher questionnaire or by having a conversation with a member of the school team. (See 'History' above.)

The provider can provide more useful information if they understand the context of the request by speaking with a member of the school team. This is especially true when a disagreement exists between the family and school team about service delivery decisions [25].

Recommendations made by the pediatric clinician following a conversation with a school team member are more likely to reflect the student's actual needs and to be considered favorably by the school. When recommendations are provided in writing, the author typically includes a statement, such as, "the following recommendations were discussed with the student's school team on (date)," to show the reader of the document that the school team's perspective was considered before the recommendations were made. This type of thoughtfulness is highly valued by schools.

Education and counseling — If the child is diagnosed with an LD, the primary care provider can educate and counsel the family about LD, service delivery decisions, educational and psychosocial interventions, unproven therapies for LD, legal rights, and resources.

Learning disorders and educational interventions — After a child is diagnosed with an LD, the pediatric clinician can provide information about the nature of the LD and its management. This includes:

Interpretation of evaluation reports (see "Specific learning disorders in children: Evaluation", section on 'Formulas used to identify learning disorder')

A description of the specific skills that may be delayed and which should be the focus of intervention in LD (eg, phoneme awareness and phonics; reading comprehension; spelling instruction; number sense; organizational skills) (see "Specific learning disorders in children: Clinical features", section on 'Clinical features' and "Specific learning disorders in children: Clinical features", section on 'LD syndromes')

A description of the types of treatments and accommodations required by students with LD (see "Specific learning disorders in children: Educational management", section on 'Quality instruction for learning disorders')

Information about the developmental and mental health conditions that frequently co-occur with LD (eg, language disorder, ADHD, behavior disorders, anxiety, depression), counseling about the social isolation that can sometimes occur as a result of LD and its co-occurring conditions, and the need to monitor for bullying (see "Specific learning disorders in children: Clinical features", section on 'Comorbidities')

The individualized education program — The pediatric provider can help the family to understand the IEP that the school team has proposed to address their child's LD.

Specific components of the IEP that merit review with the family include:

Educational objectives – The educational objectives should address all areas of suspected disability. As an example, educational objectives for children with reading problems should include improving phonologic skills, phonics skills, spelling skills, reading and writing fluency, building vocabulary, reading comprehension, and written expression.

To assess the student's progress, the educational objectives should be measurable (ie, reproducible), such as a standardized measure of phonics skills administered at predetermined intervals. Educational objectives that are not standardized must be carefully documented in the IEP to be reproducible, including a precise description of the skill to be measured (eg, phonics and reading decoding, spelling), how the adult makes the request to the student to demonstrate the selected skill, and the degree of support provided to the student after the request is made. For example:

"When asked to spell a list of grade 5 vocabulary words taken from the district's spelling curriculum, the student will achieve at least 80 percent accuracy. The student will receive one verbal prompt, will use pencil and paper to write the words, and is allowed one prompt to check for errors if they fail to do so spontaneously; there will be no physical supports; use of a dictionary is not allowed."

Availability of appropriately trained staff (eg, teachers qualified to remediate/improve reading, writing, and/or math skills).

Staff-to-student ratio – Small group instruction is needed to remediate LD [26,27]. There is general agreement that if other things are equal, students in smaller classrooms learn more. In an observational study that compared teacher-to-student ratios among children with reading difficulty who received the same type and intensity of reading interventions, reading outcome effect sizes were higher in 1:1 and a 1:3 groupings than in 1:10 groupings; outcomes in 1:1 groupings were not superior to those in 1:3 groupings [27].

Whether the classroom setting is conducive to addressing the student's individual needs (eg, general education setting versus other settings).

Consultation and collaboration among staff to ensure that educational objectives are addressed across the curriculum.

Whether the curriculum is research based; this applies predominantly to reading instruction and often must be specifically requested.

Psychosocial management — In conjunction with instructional methods to increase academic skills, children with LD may benefit from support or psychological counseling, behavior modification, and social skills training to reduce the primary or secondary emotional and behavioral problems that are associated with LD (eg, anxiety, social withdrawal, depression, conduct disorders, being a victim of bullying) [7,10,28,29].

Psychological counseling may be beneficial in:

Repairing the child's self-confidence

Developing behavioral goals and managing behavior

Restoring self-regulation or discipline at home and at school

Restoring the relationships between the child and adults

Supporting the child or family through a crisis

Treating comorbid secondary anxiety, depression, etc

The self-esteem and social skills of children with LD can be enhanced through participation in activities outside of school, particularly activities in which the child or adolescent can excel (eg, sports, music, drama, arts and crafts) [7,10,28,30]. Children who are reluctant to participate in team sports may benefit from independent activities (eg, martial arts, swimming, diving, horseback riding, skiing, bowling, track and field). Children with LD also may experience a sense of accomplishment through the completion of assigned responsibilities at school or home. The tasks that are chosen should be ones that the child is likely to perform successfully [28].

The resiliency and success of children with LD is influenced by the emotional support provided by their families (table 13) [30-33]. The ability to plan the steps required to achieve a goal (executive functions) and a sense of self-efficacy enable the child or adolescent to generate positive responses from themselves and from others, which can help overcome the frustration of learning tasks that are difficult for them. The presence of supportive adults in addition to a child's parents (eg, grandparents, mentors, coaches, members of a church group) and the existence of appropriate opportunities at major life transitions also help students with LD cope with their disability [34]. Parents, siblings, and other caregivers affect the development of self-esteem and self-efficacy through their attitudes and behaviors.

Avoiding unproven therapies — Parents should be encouraged to consult educational experts regarding nonstandard therapies, since these therapies may lack the support of research data and may be proposed to the public before they are replicated and evaluated using valid scientific methods [10,28].

Examples of unproven therapies for LD include neurologic training to correct or retrain sensory pathways and include patterning, optometric visual training, treatment of cerebellar-vestibular dysfunction, applied kinesiology, and colored overlays or lenses (Irlen overlays or lenses) [28,35-38]. There is no evidence to support the use of these therapies in the treatment of LD [39-46]. Other unproven, nonstandard therapies include the elimination of food dyes, the use of megavitamins, the supplementation of polyunsaturated fatty acids, the supplementation of trace mineral elements, and a diet to treat hypoglycemia [28,35,47].

Service delivery decisions — Special education laws in the United States require schools to make decisions by considering the input of outside providers (including the primary care provider), school team members, and the family [48]. No single clinician, teacher, or administrator is allowed to determine how services are to be delivered. When conducted successfully, this process allows the school team to consider options for service delivery that are therapeutically and educationally sound and consistent with the school ecology and resources as a whole. However, service delivery decisions are sometimes made according to the availability of services at the school rather than the needs of the student. In such cases, input from the pediatric clinician that reveals an understanding of the student's needs at school can carry significant weight in service delivery decisions at school.

Schools sometimes appear to make service delivery decisions contingent upon the pediatric clinician's input. Families and even school teams sometimes believe that the pediatric clinician's input is a requirement for the delivery of certain types of services at school (eg, specialized services for a student with ASD or support services for a student with ADHD). However, neither Section 504 of the Rehabilitation Act nor the IDEA supports the practice of withholding services until a diagnosis is confirmed or a health care provider's input is received. Schools cannot require the family to use medical insurance benefits to obtain the information that the school needs to make educational service decisions. In addition, although a handicapping condition (ie, a physical or mental impairment that considerably limits one or more major life activities) is a prerequisite for the delivery of services under both Section 504 and the IDEA, it is the functional impairment rather than the diagnosis or condition that determines the services provided [24]. Functional impairment is evaluated by the school team, not by the pediatric clinician. Schools have great legal latitude in providing services to students who may need them. Education and disability rights laws include many provisions to ensure successful service delivery to students without the input of any outside clinicians. When a medical clinician's input is needed, schools have the option of contracting directly with the clinician to obtain needed diagnostic information. Under the IDEA, schools are not required to provide medical (physician) services in the school setting, but they can be required to pay for a physician's diagnostic services. (See "Definitions of specific learning disorder and laws pertaining to learning disorders in the United States", section on 'Laws affecting the education of students with disabilities'.)

Educational versus rehabilitative services — Schools provide therapeutic services that are related to the student's education (ie, that support activities required at school) [49,50]. They do not generally offer rehabilitative therapeutic services to reverse or reduce a medical impairment. However, given the variety of tasks required by students in school, the distinction between "rehabilitative" and "educational" is not always clear. Many students receive services that provide rehabilitative benefits.

Educational and therapeutic services and interventions are offered in schools to ensure that the student can receive a "meaningful benefit" from their IEP under the IDEA [51] and/or to provide "equal access" to an education program under the Americans with Disabilities Act (ADA) (table 14). As an example, physical therapy and occupational therapy services are provided to ensure that the student can successfully navigate the school environment, remain seated and participate in classroom discussion, and complete any of the other fine or gross motor tasks required in the school setting. Similarly, speech/language services are provided so that the student can participate in classroom discussions, complete reading and writing tasks, and interact with peers. (See "Definitions of specific learning disorder and laws pertaining to learning disorders in the United States", section on 'Laws affecting the education of students with disabilities'.)

Therapeutic services that are purely rehabilitative (eg, physical therapy after a musculoskeletal injury) can and should be accessed through the child's health insurance, allowing the child to focus on education in the school setting.

Legal rights — Families of children with LD may ask the primary care provider for information about their child's legal rights in the school setting. They may obtain this information from other sources, such as the Center for Parent Information and Resources, the Council for Exceptional Children, or from other agencies (table 15). However, families do not always know how to interpret or use the information that they obtain and may turn to the primary care provider for guidance.

The primary care provider can counsel the family about the rights offered under Every Student Succeeds Act (ESSA), the IDEA, and Section 504 of the Rehabilitation Act (table 16) [19,52,53]. ESSA offers many services under general education to the student body as a whole. Most students with disabilities have rights under either the IDEA or under Section 504 of the Rehabilitation Act (which is subsumed under the ADA (table 14)) as long as they meet the functional impairment criteria set out by these laws. (See "Definitions of specific learning disorder and laws pertaining to learning disorders in the United States", section on 'Laws affecting the education of students with disabilities'.)

Resources — Multiple resources are available for health care providers, patients, and families of children with LD (table 15).

Care coordination — Care coordination is one of the primary responsibilities of the pediatric provider. In addition to overseeing the management of co-occurring conditions, the primary care clinician may make referrals to:

Specialists for the evaluation and treatment of genetic, neurologic, and/or mental health conditions.

Community agencies that provide supplementary instruction, training in behavioral regulation, opportunities to build social skills, support for the parents, etc (table 15).

Local mental health agencies and/or a developmental-behavioral pediatrician, child neurologist, or child psychiatrist who is familiar with the needs of students with LD if the etiology of the learning failure is unclear.

Advocacy and support — The primary care provider can provide advocacy and support for children and families of children with learning difficulty by:

Helping them to organize their thoughts before communicating with the school team or by speaking to the school team on their behalf. Examples include:

Helping the family to organize their questions and requests before an IEP meeting.

Communicating the family's concerns on their behalf during a telephone conversation with the school team; the author of this topic review sometimes uses the office encounter to conduct a telephone meeting with the school team with the family present.

Attending an IEP meeting with the family or suggesting that a family friend, another family member, or a hired advocate attend the meeting with them.

Providing information about the child's behavioral and medical needs to the school team. (See 'Communicating with the school team' above.)

Helping the family to understand education law. (See 'Legal rights' above and "Definitions of specific learning disorder and laws pertaining to learning disorders in the United States", section on 'Laws affecting the education of students with disabilities'.)

Advocating for services that the primary care provider believes are necessary but were not offered by the school team. (See 'Intermediary' below.)

Helping the family to understand why the school team may have decided not to provide services when the family believes services are needed. (See 'Service delivery decisions' above.)

To be a successful advocate, the primary care provider must [49]:

Have a working knowledge of psychometric measures and their interpretation. (See "Specific learning disorders in children: Evaluation", section on 'Psychometric tests' and "Specific learning disorders in children: Evaluation", section on 'Formulas used to identify learning disorder'.)

Understand the varying ways in which special education teams make decisions regarding eligibility for special education. (See "Specific learning disorders in children: Evaluation", section on 'Determination of service eligibility'.)

Understand the limitations of service obligations of schools under education law. (See "Specific learning disorders in children: Evaluation", section on 'Evaluation and identification of learning disorder in school settings' and "Definitions of specific learning disorder and laws pertaining to learning disorders in the United States", section on 'Laws affecting the education of students with disabilities'.)

At the community level, the primary care provider may advocate for children with LDs by becoming a member of the school committee or collaborating with school administrators to ensure that school systems identify and serve children with disabilities.

Intermediary — Pediatric health care providers may take on the role of intermediary when a family is in disagreement with the school team about the provision of services for their child and asks the provider for advice (table 17). The first step is to determine whether the family has a correct understanding of their legal rights and whether the school team has fulfilled the procedural safeguards required by law (eg, under the IDEA, an evaluation has to be made available at public expense and upon parent request; the evaluation has to be completed within 60 calendar days, although there is state-to-state variability [eg, in how school holidays are counted]). (See "Definitions of specific learning disorder and laws pertaining to learning disorders in the United States", section on 'Laws affecting the education of students with disabilities'.)

Next, it is important to understand the family's disagreement and why they believe that their child needs a service. Subsequently, it can be helpful to call a member of the child's school team (eg, special education coordinator, school principal) to learn why the disagreement may have arisen. Sometimes, sharing perspectives between the family and the school team is sufficient to help each party see "eye to eye." At other times, when the family has a valid reason for disagreement, they may need to be referred to advocacy services or other clinicians more experienced in managing differences of opinion (eg, developmental-behavioral pediatrician, child psychologist or psychiatrist who understands the needs of children who require special education services, an advocate or other professional at a regional parent technical assistance center (table 15)). The family can also seek redress through mediation or by due process hearings through the state board of education.

INFORMATION FOR PATIENTS — UpToDate offers two types of patient education materials, "The Basics" and "Beyond the Basics." The Basics patient education pieces are written in plain language, at the 5th to 6th grade reading level, and they answer the four or five key questions a patient might have about a given condition. These articles are best for patients who want a general overview and who prefer short, easy-to-read materials. Beyond the Basics patient education pieces are longer, more sophisticated, and more detailed. These articles are written at the 10th to 12th grade reading level and are best for patients who want in-depth information and are comfortable with some medical jargon.

Here are the patient education articles that are relevant to this topic. We encourage you to print or email these topics to your patients. (You can also locate patient education articles on a variety of subjects by searching on "patient education" and the keyword[s] of interest.)

Basics topic (see "Patient education: Learning disabilities (The Basics)")

SUMMARY

Primary care responsibilities – The diagnosis of learning disorder (LD) usually is made by educators and/or psychologists through psychometric testing. The main responsibilities of the primary care provider are to assist in the identification of LD, ensure management of LD, evaluate and address co-occurring conditions, and provide care coordination. (See 'Role of the primary care provider' above.)

Early identification – Early identification of LD is necessary to provide appropriate interventions. Pediatric clinicians should have a low threshold for considering LD in children who are at risk for LD and children who have problems at school. When LD is suspected, the primary care provider should focus on the specific learning skills and learning deficits that are characteristic of LD (table 9). (See 'Early identification' above and "Specific learning disorders in children: Clinical features", section on 'Risk factors'.)

Medical evaluation – The goal of the medical evaluation is to identify medical, neurologic, and/or behavioral conditions that may be related to the LD or co-occur with the LD. The developmental, educational, and learning histories (table 4) are the most important aspects of the evaluation. The physical examination is usually normal but should include general observations and appearance, growth parameters, examination of the skin and genitalia, assessment of hearing and vision, and neurologic examination (table 6). (See 'Medical evaluation' above.)

Roles in management

When the child's parents and/or clinicians are concerned about the child's learning, they should request an evaluation in the child's school district (table 12). (See 'Requesting evaluation in the school district' above.)

Direct communication between the pediatric provider and the school team helps to ensure that the team has the necessary information to best meet the needs of the child in the educational setting and that the team's specific questions and concerns are addressed. (See 'Communicating with the school team' above.)

If the child is diagnosed with an LD, the primary care provider can educate and counsel the family about LD, educational and psychosocial interventions, avoiding unproven therapies, service delivery decisions, legal rights, and resources (table 15). (See 'Education and counseling' above.)

The primary care clinician also can provide care coordination, advocacy, and support and help with mediation if there are disagreements between the family and the school team (table 17). (See 'Care coordination' above and 'Advocacy and support' above and 'Intermediary' above.)

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References

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