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Intellectual disability (ID) in children: Management, outcomes, and prevention

Intellectual disability (ID) in children: Management, outcomes, and prevention
Literature review current through: Jan 2024.
This topic last updated: Jan 04, 2022.

INTRODUCTION — Intellectual disability (ID) is a neurodevelopmental disorder with multiple etiologies. It is characterized by deficits in both intellectual and adaptive functioning of varying severity presenting before 18 years of age [1]. ID encompasses a broad spectrum of functioning, disability, and strengths. ID is an important public health issue because of its prevalence, its impact on affected individuals, and the need for extensive support services. ID affects approximately 1 percent of the population. Its management requires early diagnosis and intervention, including access to health care and appropriate supports.

The management, outcomes, and prevention of ID in children are discussed here. Other aspects of ID are discussed separately:

(See "Intellectual disability (ID) in children: Clinical features, evaluation, and diagnosis".)

(See "Intellectual disability in children: Evaluation for a cause".)

(See "Primary care of the adult with intellectual and developmental disabilities".)

TERMINOLOGY — The following terms are used throughout this topic and are described in greater detail in a separate topic review (see "Intellectual disability (ID) in children: Clinical features, evaluation, and diagnosis"):

Global developmental delay (GDD) – GDD is the preferred term to describe intellectual and adaptive impairment in infants and young children <5 years old who fail to meet expected developmental milestones in multiple areas of functioning. GDD may be used as a provisional diagnosis until comprehensive standardized testing can be accurately and reliably completed. Not all children with GDD meet criteria for ID as they grow older.

Intellectual disability (ID) – ID is a neurodevelopmental disorder that begins in childhood and is characterized by limitations in both intelligence and adaptive skills, affecting at least one of three adaptive domains (conceptual, social, and practical), with varying severity (table 1A-B). The extent of adaptive impairment is key to defining ID and its severity.

MANAGEMENT

Overview — The overall goals of the management of ID are to:

Lessen the effects of disability

Prevent, halt, or limit deterioration in the child

Strengthen, improve, and optimize functioning in the child's everyday circumstances (eg, home, school, community, and vocational settings)

To accomplish these goals, multiple supports are generally necessary. Interventions should be evidence-based, begin early, and be sustained; they should be initiated regardless of whether an underlying cause of ID has been identified. Goals should be individualized, appropriate, and achievable. Individualized supports should improve the functioning and lessen the disability of the person with ID.

The approach should be collaborative and multidisciplinary. Optimal use of available resources, coordinated continuity in care, monitoring of progress, and matching interventions to the unique and changing needs of individuals over time are key components. Interventions may need to be prioritized for efficacy and benefits to an individual in their everyday settings and changed according to differing lifetime needs. For example, an emphasis should be placed on vocational goals during adolescence and vocational professionals should be part of the multidisciplinary team. Ethical principles and legal considerations are also important in guiding management.

There is no universally accepted standardized protocol or practice guideline for the comprehensive management of children and adolescents with ID.

General considerations — General considerations in caring for children with ID differ somewhat from caring for typically developing children. They include the following:

Effective communication strategies – Effective communication strategies are essential when interacting with children with ID. This is relevant across all ages and settings. Communication should be clear, concise, concrete (rather than abstract), and at the level of the child's language understanding. Unnecessary details or superfluous words should be omitted; children with verbal deficits (eg, Down syndrome) often have difficulty filtering out what is irrelevant [2]. Where verbal functions are limited, communication can be enhanced by hands-on demonstration, use of visual adjuncts, or visual-spatial learning. Information should be simply, meaningfully, and respectfully shared at the functional level of the child or adolescent, especially in matters that require consent. Preschool levels of functioning are compatible with surrogate consent; primary school level of functioning enables partial participation and assent but not full consent [3].

Encouraging independent functioning – Strategies to gradually increase personal responsibility and independent functioning are needed [4]. Greater independent functioning eventually results in better vocational, employment, and placement results; advocacy, caregiver resourcefulness, and governing policies and systems can improve independent functioning in children with ID [2]. Involved decision-making should be increased according to individual capability and desire to do so [3].

Support for family members – It is important for health care providers to provide support and counseling to families of children with ID. Support services for affected family members can help address psychosocial stress, depression, helplessness, anxiety, and need for respite. Levels of psychosocial stress and optimism vary among families who have a child with ID or global developmental delay (GDD). Families of severely impaired children with multiple special needs frequently have the greatest need for psychosocial support; families of children with Down syndrome report less stress and more optimism [2]. It may be helpful to connect families with supportive parent groups and other resources in their community; often, this is accomplished with the help of a social worker. Examples of organizations that can help inform, support, and advocate for individuals with ID include The Arc, Family-to-Family Health Information Centers, Autism Society of America, and support groups corresponding to specific genetic syndromes or conditions (eg, fragile X, Down syndrome). Such organizations and other forms of community participation can help support positive social relationships for a child with ID and his or her family. Positive, warmly nurturing, patiently encouraging parenting styles are more helpful to support child resilience than negative parenting; urging achievable independence and task completion is advised.

Advocating on behalf of the child – Parents and providers are frequently effective in advocating for a child with ID, such as motivating for necessary services to advance functioning. For providers, this is an ethical responsibility of taking care of vulnerable children with special needs. By definition, ID requires ongoing support [1]; children with ID are able to make progress, provided that they receive appropriate supports. Advocacy (eg, by parents) and caregiver resourcefulness are factors that improve independent outcomes in children with ID [2].

Multidisciplinary collaboration – In the United States, the approach to caring for children with ID typically involves multiple providers collaboratively contributing to the assessment of ongoing needs and recommendations for targeted interventions and support in their area of expertise. The medical home and the pivotal role of parents or family are important and nevertheless emphasized.

Preventative screening and routine care — General preventative screening and routine health care maintenance interventions should be no less than those of typically developing children. There are no anticipatory guidance protocols that comprehensively cover the needs of all children and adolescents with ID; anticipatory guidance should address age-specific as well as functional level-specific preventative health risks and needs. (See "Screening tests in children and adolescents" and "Guidelines for adolescent preventive services".)

Longitudinal developmental surveillance — Effective longitudinal developmental surveillance in ID expands upon standard pediatric surveillance and the initial assessment performed to establish the diagnosis of ID. Various providers can contribute to this, including developmental pediatricians, neurodevelopmental neurologists, and/or clinical psychologists.

Longitudinal surveillance is coupled with direct interventions over the course of a child's life to advance and strengthen functional progress. ID-specific concerns of the parent, provider, and individual are taken into consideration. The individual's functional profile (relative strengths, impairments, challenges), developmental trajectory (progress, plateau, stagnation, skill loss), and ongoing management plan can be sensitively discussed with the family and appropriate targeted supports put in place. The management plan requires collaborative agreement and application.

Goals may need adjusting to optimally strengthen and advance functioning. The child's environment may need to be modified. Interventional strategies should be flexible and responsive towards the needs of the individual and their family [4].

Serial standardized testing assessments generate a curve of the individual's progress over time, which helps guide interventions. For example, nonverbal and visual learning strengths may be paired with interventions aimed at improving language weakness. Identification of difficulties with certain motor skills (eg, eye-hand coordination, fine or gross motor skills) may prompt additional specific supports to address these issues.

If there are multiple conditions contributing to impairments in a child with ID, comprehensive testing can better inform interventional strategies. If deficits involve only a single domain, a narrower focus is usually appropriate.

The tool(s) used for testing should include lower-level skills with reasonable accuracy. The choice of a specific tool is individualized based on the child's age, language, functional level, disability profile, and affected domains. Specific tools are summarized in the table and discussed in greater detail in separate topics (table 2). (See "Intellectual disability (ID) in children: Clinical features, evaluation, and diagnosis", section on 'Assessment of adaptive function' and "Developmental-behavioral surveillance and screening in primary care".)

The progress of children with ID is often compared with typical normative curves of children without a disability, but progress may also be compared with cause-specific normative developmental milestones or outcome curves for individuals with ID as they become available (eg, in a studied population of individuals with Down syndrome) [5].

Early interventions for intellectual disability — Early application of evidence-based interventions optimizes functioning and progress of infants and children with ID. Most individuals with ID require a broad range of interventions specific to their needs and functional deficits. Examples include:

Speech and language therapy – Most individuals with ID have some level of language-based impairment, which can impact their conceptual adaptive functioning and other daily living functions and activities. Speech and language therapy can advance a child's language, speech, articulation, and communication functioning, and it advances other skill gains. (See "Evaluation and treatment of speech and language disorders in children".)

Occupational therapy – Occupational therapy can advance functional gains in eye-hand coordination and other motor skills.

Physical therapy – Physical therapy can improve mobility and other motor skill functions and provide postural support and other adjuncts for affected individuals.

Hearing and vision services – Services for hearing and vision are important to optimize functioning and improve everyday participation. (See "Vision screening and assessment in infants and children" and "Hearing loss in children: Treatment".)

Early education assessment and services – In the United States and many other countries, early education services are widely applied to advance educationally pertinent development, behavior, and learning. (See 'Early intervention' below and 'Special education' below.)

Functional living skills – Functional living skills should be included from a young age. Help with problem-solving and planning are usually necessary. In the classroom, strategies may include preferential seating (eg, seating the child close to the teacher), providing additional time, redirecting to stay on task, minimizing distraction, using interests and strengths to advance weaker functions, reducing complex tasks into discrete sequential steps, using observational and multisensory learning approaches (eg, visual presentation and hands-on demonstration), applying checks for understanding, and reinforcing and generalizing learning. Children and adolescents with ID are less likely to ask for help or let others know when they do not understand [2].

Family-centered interventions – Specialists involved in managing children with ID can advise interventions for caregivers and family to practice with the child at home. These have long been used to informally extend intervention to the home setting and are known to improve child and family psychosocial well-being. Family-centered interventions also provide continuity of care should educational and other services be interrupted (as occurred in the height of the coronavirus disease 2019 [COVID-19] pandemic). Ideally, children with ID should have an updatable, evidence-based home intervention plan targeted to their needs, with input from the respective professionals in the care team [6-8].

Social support – Interventions that focus on improving social participation are important for children with ID. This can improve independent functioning and enhance quality of life. Compared with typically developing peers, young children with ID tend to have less frequent play with other children, fewer friends, poorer-quality friendships, and reduced levels of social participation [9,10]. Social supports may be provided in educational and other settings [2]. Community integration interventions can improve friendship development and inclusion in recreation with typical peers. Participation can be enhanced by selecting activities appropriate to the ability and interest of the child and including individualized mentoring along with peer interactions [11,12].

Behavioral interventions – Behavioral interventions may be aimed at addressing difficult behaviors or specific comorbid conditions (eg, attention deficit hyperactivity disorder [ADHD], autism spectrum disorder (ASD), anxiety, depression, sleep problems) [13]. Behavioral interventions can improve behavior-related functioning, performance, and participation in everyday activities and during other service interventions. Interventions that lack a sufficient evidence base are advised against (eg, sensory treatments) [14]. (See 'Behavior intervention' below.)

Consultation with a dietician – Consultation with a dietician may be necessary in some cases to address malnutrition-specific dietary needs (eg, in metabolic or endocrine disorders) or to evaluate the child's nutritional status and ensure a well-balanced diet. Evidence is lacking to support alternative dietary treatments or supplements. In particular, high doses of fat-soluble vitamins should be avoided because excessive doses can have toxic effects. (See "Poor weight gain in children older than two years in resource-abundant settings" and "Dietary recommendations for toddlers and preschool and school-age children", section on 'Dietary composition'.)

Treatment of specific causes of intellectual disability — Most causes of ID do not have a specific treatment or intervention. However, if a treatable underlying cause of ID is identified (eg, congenital hypothyroidism, treatable inborn error of metabolism), the child should be promptly treated to prevent further disability. (See "Intellectual disability in children: Evaluation for a cause" and "Treatment and prognosis of congenital hypothyroidism" and "Overview of phenylketonuria", section on 'Management'.)

A curated list of treatable diseases that can cause ID is available at the Treatable ID website [15].

Management principles for common causes of ID are discussed in separate topic reviews:

Fetal alcohol spectrum (see "Fetal alcohol spectrum disorder: Management and prognosis")

Down syndrome (see "Down syndrome: Management")

Fragile X syndrome (see "Fragile X syndrome: Management in children and adolescents")

Rett syndrome (see "Rett syndrome: Treatment and prognosis")

In addition, other impairing coexisting conditions should be appropriately treated. (See 'Associated conditions' below.)

Associated conditions — Children with ID are at increased risk for associated conditions, including other neurodevelopmental disorders, mental health problems, and medical and physical conditions (table 3).

Neurodevelopmental disorders and mental health problems — Disorders such as ASD, ADHD, depression, and anxiety are common in children and adolescents with ID and can adversely impact quality of life, adaptation, and individual functioning. (See "Intellectual disability (ID) in children: Clinical features, evaluation, and diagnosis", section on 'Comorbid neurodevelopmental disorders and mental health problems'.)

Self-injurious behaviors may be a manifestation of stress, depression, anxiety, or medication side effect (eg, of sedative-hypnotic and neuroleptic medication).

Repetitive or self-stimulating behaviors are more common in severely impaired children with ID.

Recognizing and treating depression in children with ID is particularly important as depression can persist and impact functioning into adulthood. Depression occurs more frequently in ID due to Down syndrome than in ID due to other causes and frequently needs sustained follow-up [2]. (See "Overview of prevention and treatment for pediatric depression".)

Youth with ID are at increased risk of suicidal ideation and substance abuse compared with typically developing peers. (See "Suicidal ideation and behavior in children and adolescents: Evaluation and management" and "Substance use disorder in adolescents: Epidemiology, clinical features, assessment, and diagnosis".)

Disorder-specific surveillance and interventions are necessary for comorbid neurodevelopmental disorders (eg, ASD, ADHD), with referral as needed. (See "Autism spectrum disorder in children and adolescents: Overview of management" and "Attention deficit hyperactivity disorder in children and adolescents: Overview of treatment and prognosis".)

Behavioral and emotional problems in children with ID may not necessarily meet standard diagnostic criteria for a disorder but may nevertheless be troublesome [16].

Interventions include family counseling, education, behavior interventions designed to address a specific type of neurodevelopmental disorder in the child (eg, ADHD or ASD), and psychopharmacologic therapy (where this is recommended standard of care in children) [17]. Interventions should be appropriate to the child's developmental level of functioning and diagnoses.

Although most children with ID can be successfully helped by appropriate behavioral approaches and environmental manipulation, some require pharmacologic treatment. Psychopharmacologic therapy is more likely to be used in children who have a comorbid neurodevelopmental disorder or whose ID is severe. Appropriate use of medication, when indicated, can improve the child's mental health, participation, and functioning and secondarily reduce their burden of care. However, medications are generally started only after initial adequate appropriate behavioral intervention, so as to minimize the risk and unnecessary use of medication [18]. Because the evidence base for making general psychopharmacologic recommendations in young children with ID is relatively limited, a carefully considered therapeutic trial may be indicated to assess whether a therapy is successful in an individual patient.

The use of medications should be part of a clear comprehensive psychosocial treatment plan that includes behavioral baseline functioning, identified target behaviors, goals, and evidence-based intervention appropriate to the diagnosis and target behaviors [17,19]. A child psychiatrist, child neurologist, or developmental pediatrician can help guide individual psychopharmacologic management, especially where there are multiple comorbid disorders. Prior to initiating pharmacotherapy, the clinician and caregivers should agree upon measurable goals and target behaviors. In addition, patients with irritability, aggression, self-injury, or disruptive behavior should be evaluated for other possible causes, including underlying medical or psychiatric disorders or abuse.

Potential adverse effects must be weighed against possible benefits in treatment decisions. Medications that control behaviors can have negative effects on attention, concentration, learning, and quality of life and can cause a temporary or persistent drug-related movement disorder [20]. The safest, most effective treatment at lowest possible dose is aimed for, beginning with a low initial dose and then slowly increasing ("start low, go slow"), monitoring the patient's response before making dose adjustments. Ideally, medication regimes should be simple and use the fewest possible doses in children with ID. Idiosyncratic responses to medication are possible. For example, patients with ID may have increased sensitivity to the disinhibiting effects of sedative-hypnotics and children with Down syndrome may be especially sensitive to anticholinergic medication [17].

Pharmacotherapy for specific disorders is discussed in separate topic reviews:

(See "Autism spectrum disorder in children and adolescents: Pharmacologic interventions".)

(See "Attention deficit hyperactivity disorder in children and adolescents: Treatment with medications".)

(See "Pharmacotherapy for anxiety disorders in children and adolescents".)

(See "Pediatric unipolar depression and pharmacotherapy: Choosing a medication".)

(See "Pediatric bipolar disorder and pharmacotherapy: General principles".)

Child abuse and neglect — Vigilant surveillance, sensitivity, and a high index of suspicion should be maintained so as to detect, prevent, and address manipulation, abuse, and/or neglect of children with ID [21,22]. The child's cognitive and social impairment, literal thinking, inadequate knowledge, and misunderstanding of the expectations and emotions of others may contribute to the cycle of abuse. Abuse may precipitate further behavioral disorder in the child (eg, conduct disorder, posttraumatic stress disorder, substance abuse), and those who suffer abuse are at increased risk of becoming a perpetrator. Children with ID have a fivefold increased risk of sexual abuse; adolescent females are at greatest risk [22]. Tools such as the Family Psychosocial Screening may help screen families for concerns of abuse and maternal depression. (See "Child neglect: Evaluation and management" and "Physical child abuse: Recognition".)

Medical and physical conditions — Numerous medical and physical conditions are commonly associated with ID (table 3). Care should be taken to promptly identify and treat these conditions. (See "Intellectual disability (ID) in children: Clinical features, evaluation, and diagnosis", section on 'Medical and physical conditions'.)

Environmental neurotoxic exposure — Neurotoxic environmental exposure can cause measurable declines in intellectual functioning [23]. The most common environmental neurotoxin is lead, which can harm cognitive function at low and high levels of exposure [24]. In the United States, lead surveillance is recommended for all children with ID. This is discussed separately. (See "Screening tests in children and adolescents", section on 'Lead poisoning' and "Intellectual disability in children: Evaluation for a cause", section on 'Lead screening'.)

Sleep disorders — Sleep disorders are common in children with ID and can impact cognitive performance, memory, learning, attention, and behavior. Sleep problems tend to be more severe in children with ID compared with typical peers. Screening and intervening for sleep problems can improve both individual as well as family functioning. Behavioral interventions should be individualized, with a goal of encouraging appropriate sleep hygiene, providing a supportive routine, and avoiding inadvertent reinforcement of undesirable behaviors. Interventions need consistent application. Sleep problems in children with ID tend to improve gradually with appropriate intervention, and they may escalate before improving. (See "Behavioral sleep problems in children".)

While most sleep issues in children with ID can be managed in the primary medical home, more severe cases may need referral to a sleep specialist. Sleep disorders can be more complex in the setting of an underlying genetic syndrome causing ID. For example, children with Down or Prader-Willi syndromes are at risk for obstructive sleep apnea and those with Smith-Magenis syndrome may have insomnia. Children with these conditions generally require formal evaluation by a sleep specialist with polysomnography. (See "Evaluation of suspected obstructive sleep apnea in children" and "Down syndrome: Clinical features and diagnosis", section on 'Sleep apnea' and "Prader-Willi syndrome: Management" and "Microdeletion syndromes (chromosomes 12 to 22)", section on '17p11.2 deletion syndrome (Smith-Magenis syndrome)'.)

Behavior intervention — Interventions for problem or disordered behavior can improve participation and functioning in children with ID. Most children with ID benefit from interventions to improve socialization skills and behavioral functioning. These should be individualized, with the child's interests in mind. They should be applied consistently to support optimal thinking, expression, behavior, and adaptive functioning. Secure emotional attachment, parental warmth, and communicative social interactions are relevant early goals.

The function served by a child's problem behavior (eg, an expression of frustration or need), its antecedent triggers, and the reaction of others (such as inadvertent reinforcement of undesirable behavior) should be considered. Desirable behaviors should be positively reinforced, and restraining or punitive aversive approaches should be avoided. Interventions should be appropriate to the child's level of functioning (particularly language functioning). Specific techniques may include the following:

Reducing identified triggers of problem behaviors. This may include modifying the child's environment (eg, giving a child more space when an interfering behavior occurs in the context of close proximity or reducing noise when noise is the trigger).

Reinforcing acceptable behaviors by rewarding the child with positive attention ("time in" attention) or a desired reinforcer such as an appropriate treat or a preferred activity.

"Ignoring" misbehaviors so that a child no longer uses them to get attention (provided that the behaviors are not dangerous to the child or another person).

Redirecting the child's attention to preempt the expression of a problem behavior or extinguish it early (eg, draw the child's attention to something of interest when a problem behavior appears imminent).

Introducing appropriate behaviors that are incompatible with the problem behavior (eg, place the child's hands in an appropriate position or activity that replaces their use in a problem behavior).

Promptly removing the child from an activity when a targeted problem behavior occurs (the child is placed calmly and safely in "time out").

Various strategies for reducing problem behaviors can be helpful in school-age children. A school psychologist can assist with behavioral difficulties in the child's educational setting. Applied behavioral analysis can improve staying on task and help extinguish unwanted misbehaviors that challenge participation in various settings [2]. Group psychotherapy may be helpful for children at school ages with sufficient communication and intellectual functioning to meaningfully participate (a minimum of six to seven years of age-equivalent intellectual functioning is usually necessary). In general, a group intervention should be part of a comprehensive treatment program and involve a trained therapist. Techniques need to be adapted to the child's level of functioning. Group therapy is most applicable to adolescents and is particularly useful in social skills training.

Children with higher levels of self-esteem and independence tend to have fewer problem behaviors. Transition interventions for youth should include problem-solving, planning, issues of sexuality, knowledge of rights, issues of transition into adult life, and preparation for independent community living. (See 'Transition planning' below.)

Residential setting — In the United States, most individuals with ID live in integrated community settings rather than in specialized residential care [25]. The community setting can be successful if appropriate individualized health care, supports, and services are provided [26]. However, families of children with ID and challenging behaviors can experience considerable stress [27]. High-quality interventions are costly in both community-based as well as specialized residential settings [28]. Residential programs or day support services can offer a structured setting that helps to manage challenging behaviors, promotes participation in activities, provides individualized supports, and permits respite for family [27]. Placement decisions are influenced by the age of the individual, their abilities and functional profile, the nature and extent of needed supports, and environmental factors.

Deinstitutionalization has improved the lives of many individuals with ID. However, there appears to be an increased mortality risk when individuals with ID are transferred from institutional to community care [29,30]. Thus, necessary services, equipment, environmental modifications, caregiver training, and readiness may need to be considered prior to transferring a child with ID and chronic health conditions [31,32].

Transition planning — Transition planning refers to anticipating and facilitating the transition from childhood to adulthood and promoting self-sufficiency. Included in this is the transition from pediatric care services to adult services. For children with ID, transition planning should begin at or by age 12 years [33,34]. In the United States, the Individuals with Disabilities Education Act (IDEA) mandates that affected students have a transition plan by 16 years of age; however, earlier transition and vocational planning is encouraged well before this age.

Early individualized discussions and interventions gradually prepare the child and family. These may address issues of vocation, independent living/functioning, independent decision-making or guardianship, care coordination, sexuality, reproduction, life expectancy, health insurance, eligibility for adult community-based services, medical management by different specialists, advance directives, and communication preferences of the child or youth with ID. The child or youth with ID should be involved as much as possible in the development of the plan and the decision-making process; his or her level of understanding should be assessed and documented. Student advocacy and self-determination should be encouraged. The family should also be included. Youth with ID and autism have greater identified needs for support after school and are less likely to take an active leadership role compared with those without autism [35].

A transition plan should be documented by age 14 years and reviewed annually thereafter [33]. A transition plan focuses on interventions needed to attain transition readiness and accomplish successful transition. It may include assessment of transition readiness, setting realistic goals, and planning anticipated timelines. It is used to implement and monitor the transition process until 18 years of age, or the time of actual transition, which may be later.

Transition services may help individuals adjust from school to adult settings with occupational and other activities and prepare young people with ID for anticipated changes. Interventions may help individuals to advocate for themselves. Supports may include a job coach, assistance with transport, legal advocacy, supported employment, social security disability benefits and income, or assisted living.

Transition-related resources for professionals include educational guide books, evaluation tools, and checklists. Such tools are available at the following websites:

National Health Care Transition Center – Got Transition

American College of Physicians Pediatric to Adult Care Transitions Toolkit

Jacksonville Health and Transition Services

University of Wisconsin Waisman Center

When the youth actually transitions to adult services and providers, the health record, comprehensive summary of medications, and individualized collaborative care plan should accompany the individual with ID. It is particularly important to indicate which specific communication strategies are most effective for the individual.

Transition and post-transition functioning may be impacted by factors such as availability and access to services, opportunities for housing and employment, access to transport, and the individual's family system [36]. Other health conditions may also have a significant impact and frequently make transition more difficult. It is not unusual for individuals with chronic health conditions to experience a decline in health after transition [37]. (See "Children and youth with special health care needs", section on 'Transition planning'.)

In the United States, one initiative for improving the quality of transition and post-secondary programs is the Transition Programs for Students with Intellectual Disabilities (TPSID) program. Interventions aim to advance intellectual and adaptive functioning, improve self-advocacy, incorporate occupational experience, and provide vocational skills. Additional information is provided through the United States Department of Education website.

LEGISLATIVE MANDATES — In the United States, federal legislation supports a range of services for children with ID. The Individuals with Disabilities Education Act (IDEA) provides for early intervention and special education for children with disabilities from birth to 21 years of age. According to the Rehabilitation, Comprehensive Services, and Developmental Disabilities Amendments of 1975 (PL 95-602 of 1978), individuals are considered to have disabilities if they have mental and/or physical impairment occurring before 22 years of age that results in substantial functional limitation in at least three areas of life activity [38].

Youth with ID and their families may need assistance in understanding the rights afforded to them by federal laws, such as IDEA and the Affordable Care Act (ACA) and their application in the context of other programs such as Medicaid, Title V, Supplemental Security Income (SSI), and Social Security Disability Income (SSDI) [39].

Early intervention — Early intervention is advised for children identified before three years of age who have or are at risk of having disabilities, which are broadly defined. Infants and children are eligible for early intervention services if they have an identified developmental delay or a condition that puts them at risk (eg, Down syndrome, prematurity). Infants and children should be referred as early as possible to the appropriate local agency. Referral can be made by a professional or caregiver.

Early intervention provides comprehensive evaluation of the child's needs and functions. It provides individualized multidisciplinary comprehensive services to support early learning and functional progress. Early intervention services are usually provided in the child's home, but the location and type of services can vary [40]. (See "Developmental-behavioral surveillance and screening in primary care", section on 'Early intervention or special education services'.)

Special education — Under IDEA, special education and related services can be provided for children from 3 to 21 years of age. All children with disabilities are mandated to receive a comprehensive education in the least restrictive environment, with priority given to the most severely impaired children. IDEA requires the states to identify and evaluate eligible children and generate an Individualized Education Plan (IEP) annually, with comprehensive, measurable, and appropriate functional goals based on the child's current level of performance and including specific services that the school will provide for the child.

The legislation includes procedural safeguards with due process, so that parents may advocate and participate actively in their child's education. Requirements for the participation of clinicians and the extent of their participation vary among states. When it is not required by the state, parents may choose to obtain a clinician's evaluation.

Special education services offered by the school may include training in social skills, assistance in self-help, vocational training, behavioral assistance, and academic program modifications. The comprehensive educationally pertinent needs of the individual are considered; the intelligence quotient (IQ) of the student should not solely direct decision-making. Children may be placed in a regular class with supports or in a special education class or placed in resource classes; an aide may also be provided for the child.

Principles of least restrictive environment and inclusion must be applied to enable the child with ID to participate with children who do not have a disability. Not all children can participate in regular academic classes, but, depending on the extent of their disability, children may be included in many other activities such as homeroom, physical education, lunch, recess, art, or music. Assistive technology options can reduce the effect of the disability and improve functioning in communication, daily living, mobility, communication, education, and vocational preparation. Other educational settings are available for children who are unable to attend regular classes. These include a self-contained special education class with adaptive, self-help life skills training, a specialized day school, or, in rare cases, a residential institutional placement.

According to the IDEA Improvement Act of 2004, an Individualized Transition Plan (ITP) must be included in the student's annual IEP beginning at 16 years of age, although transition and vocational planning is encouraged well before this. (See 'Transition planning' above.)

OUTCOME

Overview — ID is associated with lifelong impairments that have social, psychological, economic, and other long-term consequences. The intelligence quotient (IQ) score is not an accurate measure of long-term potential. The combination of adaptive and intellectual functioning in ID is more predictive of outcomes than intellectual functioning or an IQ measure alone. The quality of life of individuals with ID has improved considerably in settings where institutionalization is uncommon and support services and employment opportunities are available. However, long-term outcomes among individuals with ID suggest that there is a continued need to intervene for this population [37,41].

In general, individuals with ID are more likely to experience each of the following compared with individuals without cognitive disabilities [2,37]:

Reduced overall extent of learning and education

Reduced levels of employment, occupational opportunity, and income, with disproportionately reduced earnings

Increased long-term risk of poverty

Poorer, disparate long-term health outcomes

Reported functional outcomes in ID vary considerably. Studies often omit the most severely affected individuals, resulting in more favorable estimates of outcomes [2].

Outcomes for children with ID depend on multiple factors, including:

Severity level – Individuals with mild ID generally have greater capacity to respond to intervention than those with more severe ID. Thus, children with mild ID usually attain more learning, speech and language, reading, interpersonal communication, and vocational skills than individuals with severe ID. Other conditions that coexist with ID contribute to variable outcomes. (See 'Outcomes according to severity level' below.)

Cause of ID – Different etiologies of ID can have distinct clinical profiles with a characteristic course (eg, Rett syndrome) or range of functional outcomes (eg, Down syndrome, fragile X syndrome, fetal alcohol syndrome). Establishing an accurate diagnosis helps with prognostication. (See "Intellectual disability in children: Evaluation for a cause".)

Intellectual deficits may be distinctively worse in some causes of ID than in other causes of ID. For example, individuals with Down syndrome have disproportionate deficits in executive functioning, verbal working memory, and reaction times that exceed those of other individuals with ID [2]. Such deficits may persist and can become more obvious over time, especially with increased demands. However, outcomes can vary considerably even within the same etiology.

Most causes of ID do not result in progressive deterioration in function, though some genetic and metabolic causes are expected to cause progressive worsening in function. In other cases, cognitive deterioration can occur from another cause (eg, when a patient with ID has an accidental brain injury or develops Alzheimer disease).

Newborn screening has been pivotal to improving outcomes in individuals with certain treatable causes of ID (eg, inborn errors of metabolism) or concurrent impairing condition (eg, endocrine abnormality). (See "Overview of newborn screening".)

Comorbid conditions – Other comorbid conditions (eg, other developmental disabilities, mental health problems, vision or hearing impairment, motor deficits, seizure disorder) may impair progress, transition, and functional outcomes in individuals with ID. For example, in a child with ID and cerebral palsy, gross motor impairment primarily determines mobility outcomes, while cognitive impairment is important in determining the performance of daily living activities [42]. Persistent impairment due to autism impacts transition and post-transition outcomes. Behavioral difficulties, substance abuse, obesity, depression, suicidal ideation and attempt, limited understanding of risk and accidents, neglect, and abuse or harm perpetrated by others may also impact the course and functioning of an individual with ID.

Environmental and social factors – Multiple environmental factors affect the natural history and outcome of ID. Family, socioeconomic, and psychosocial factors may impact the child's course. Social opportunities are important, and caregiver support, expectations, attitudes, and motivation can have an effect. Children with ID are more likely to be affected by poverty compared with typically developing children [9].

Access to services – The availability and provision of individualized supports (eg, early intervention and educational, vocational, transition, and post-transition services) have a considerable impact on outcomes for individuals with ID [38]. Deinstitutionalization has improved the lives of many individuals with ID; however, specialized support needs have shifted into community settings, which requires planning, financial provision, and comprehensive services. Appropriate supports lessen the impact of disability and improve the functioning of individuals with ID. For many children, developmental progress is manifested by stable, enduring gains in function, but, for others, the improvements are contingent upon sustaining support [1]. For youth with ID, factors that impact the success of transitioning into adulthood include access, availability, and provision of needed interventions; quality and extent of transition and post-school services; necessary expertise in care; residential options; occupational opportunities; transport; and socioeconomic and family factors [36]. Transition of individuals with ID is important to subsequent progress and long-term functioning. (See 'Transition planning' above.)

Outcomes according to severity level — The level of severity in ID markedly influences short- and long-term outcomes. Severity is defined by the level of support needed rather than by IQ scores (table 1B) [1]. (See "Intellectual disability (ID) in children: Clinical features, evaluation, and diagnosis", section on 'Severity classification'.)

Mild intellectual disability — Most affected children and adolescents have mild ID. Children with mild ID attain higher levels of skills and progress at a faster pace than children with more severe ID. Children with mild ID can be anticipated to gain skills at approximately one-half to two-thirds of the rate of children without ID. Outcomes vary depending on coexisting conditions and level of support provided. Standardized test scores achieved by children with mild ID tend to decrease over time, compared with typically developing children. However, some children with mild levels of global developmental delay (GDD) who receive appropriate early intervention may make sufficient progress by five years of age such that they may not meet criteria for ID. In addition, some children with ID can improve in their adaptive functioning with appropriate individualized intervention and no longer meet adaptive impairment criteria required for an ID diagnosis.

Most children with mild ID need sustained academic supports to be able to learn and acquire age-typical conceptual skills, such as reading [1]. With appropriate supportive services, children with mild ID usually accomplish reading at a 3rd to 6th grade level by late adolescence [43]. However, some adults with mild ID are functionally illiterate. Individuals with mild ID have difficulties grasping complex information. Planning, problem-solving, and money management need long-term support. Greater gullibility, less mature judgment, and vulnerability to manipulation put children and adolescents with mild ID at particular risk.

Children with mild ID have better social skills, communication, and social judgment than children with more severe ID, and they usually can relate to others, communicate in friendship, and display social play and extracurricular interests. However, their interests and skill levels may be similar to those of younger children. Social adaptive and communication outcomes vary depending on other coexisting conditions. Children with autism have disproportionate impairment in social skills communication for their level of cognitive functioning.

The long-term outcome of individuals with mild ID is related to their combined cognitive and adaptive functioning. Most individuals with mild ID are able to accomplish independent daily living activities. Many are able to live independently with provided supports, including decision-making for health, nutrition, finances, or raising a family. Adults with mild ID can marry and become parents, although raising children is challenging.

Individuals with mild ID have the greatest potential for vocational placement, provided that they receive appropriate individualized services and that other comorbidities aren't prohibitive. Some affected adults can attain a simple regular position requiring straightforward occupational skills or paid employment in a competitive workplace, given appropriate supports. However, adults with low levels of functional independence need sheltered employment and assisted living or a group home. In one report of long-term follow-up of 52 individuals with mild ID followed from birth to adulthood, 73 percent were married, 67 percent had a job, 62 percent had children, and 54 percent owned their own home [44].

Moderate intellectual disability — Approximately 10 percent of individuals with ID have moderate ID. Children with moderate ID are able to slowly make progress in skill development and usually develop at approximately one-third to one-half of the rate of children without ID [43].

School-based academic and social development gains are slow. Conceptual skills lag well behind those of peers; substantial help or support is needed for conceptual tasks. Academic skills in adults are typically at elementary level. Children with moderate ID learn to read essential words and signs such as "stop," "exit," or "danger." With educational services, a child with moderate ID can eventually learn to read at a 1st to 3rd grade level.

Simple spoken language and social friendships are possible but significantly limited by social and communication deficits. Social cues, social judgment, and social decisions need regular help and support.

Long-term outcomes of moderate ID vary markedly, dependent on the presence and extent of coexisting conditions and disorders that frequently complicate moderate ID. Most individuals with moderate ID are capable of learning daily living activities and can achieve independent self-care, with sufficient teaching and support. Complex daily living tasks (eg, money management) need considerable support. Most individuals are able to reside in a group home in a community setting with support. The majority of adults with moderate ID need sheltered, supported, noncompetitive, vocational positions with minimal communication and conceptual demands, although some are capable of performing unskilled work. Few with moderate ID are able to marry or raise children.

Severe intellectual disability — Only 3 to 4 percent of individuals with ID are severely affected. Children with severe ID gain skills at a rate of approximately one-quarter to one-third of that expected for children without ID and approximately one-half of the pace of children with mild ID.

Individuals with severe ID have little understanding of written language or number, time, or money concepts; caretakers provide extensive help in problem-solving.

Individuals with severe ID derive benefit from healthy, socially supportive interactions with familiar people who relate at the level of the individual's development. Speech development may be delayed until four to five years of age, although some do not develop speech; individuals may use a basic single word or phrase or gesture to communicate direct experience.

Most individuals with severe ID require training in social and self-help daily living skills in high school and may be trainable in some basic daily living activities, while requiring significant ongoing support and supervision. Adults without prohibitive coexisting conditions may be able to participate in sheltered vocational settings and, if not behaviorally disruptive, reside in a group home in the community with appropriate supports. The majority of adults with severe ID need substantial assistance with daily living and social skills. In general, severely affected individuals do not marry or raise children [43]. Severe ID is associated with a reduced lifespan.

Profound intellectual disability — Approximately 1 to 2 percent of children with ID have profound impairment. Individuals with profound ID may express themselves nonverbally and understand a simple instruction, gesture, or emotional cue. However, outcomes are highly variable and can vary from total dependence to some simple expression and social responsiveness; some individuals learn simple self-care in dressing or feeding.

Individuals with profound ID are usually dependent in all aspects of daily living and have pervasive need of supports. Some affected individuals benefit from training in self-help skills, though gains are very slow. Individuals may use objects in a goal-directed fashion in self-care or simple recreation. Most need high school classes in life skills and comprehensive assistance. Individuals with profound ID do not learn to read. Concurrent sensory and physical limitations are common, and coexisting medical conditions may need additional equipment. Medical needs, coexisting conditions, and behavioral characteristics impact placement decisions for individuals with profound ID [43].

Profound ID is associated with reduced life expectancy, though the extent depends on the cause, complicating disorders, and the individual's mobility. In one report of 7060 people with profound ID, life expectancy was considerably higher among individuals who were mobile (even if unable to walk) and capable of eating with assistance compared with individuals who were immobile and/or dependent on tube feeding (23 versus 4 to 8 years) [45].

PREVENTION — Most causes of ID cannot be prevented. Preventive strategies include:

Primary prevention – Primary prevention describes measures to prevent ID by addressing the conditions that cause or contribute to ID. There are numerous examples of primary preventive strategies for ID; some notable examples include:

Reducing prenatal alcohol exposure (see "Alcohol intake and pregnancy")

Ensuring adequate folic acid intake during pregnancy (see "Preconception and prenatal folic acid supplementation")

Reducing the risk of congenital infection (see "Overview of TORCH infections", section on 'Screening for TORCH infections')

Reducing lead exposure in infants and children (see "Screening tests in children and adolescents", section on 'Lead poisoning')

Measures aimed at reducing poverty

For genetic forms of ID, appropriate genetic testing and counselling, including estimates of recurrence risks, can facilitate informed decision-making about reproductive options in the future. Preimplantation genetic diagnosis and prenatal diagnosis is possible for some forms of genetic ID. (See "Preimplantation genetic testing".)

Secondary prevention – Secondary prevention is directed at treating an underlying condition to minimize the risk of impairment in children diagnosed with or at risk for ID. Examples include:

Dietary restriction or other interventions in children with treatable inborn errors of metabolism (eg, phenylketonuria, galactosemia) (see "Overview of phenylketonuria" and "Galactosemia: Management and complications")

Thyroid hormone replacement in a child with hypothyroidism (see "Treatment and prognosis of congenital hypothyroidism" and "Acquired hypothyroidism in childhood and adolescence", section on 'Treatment and prognosis')

Treatment of vision and hearing impairments that may be associated with ID (see "Vision screening and assessment in infants and children" and "Hearing loss in children: Treatment")

Management of seizures, dysphagia, and other coexisting medical disorders [46] (see "Seizures and epilepsy in children: Initial treatment and monitoring")

Tertiary prevention – Tertiary prevention is aimed at maximizing function and quality of life, while attempting to reduce functional disability. This approach includes all of the interventions described in the preceding sections. (See 'Management' above.)

SUMMARY AND RECOMMENDATIONS

Goals – The overall goals of management of intellectual disability (ID) are to lessen the effects of disability and improve functioning; to prevent or minimize further deterioration relative to peers; and to promote optimal functioning in the child's home, school, vocational, and community settings. (See 'Overview' above.)

Importance of early intervention and collaborative approach – Interventions should begin early and should be individualized and sustained. The approach should be collaborative and multidisciplinary. Depending on the individual's needs, intervention may include speech and language therapy, occupational therapy, physical therapy and rehabilitation, vision and hearing services, family counseling and support, behavioral intervention, interventions to improve social participation, educational assistance, community integration, independent functioning and life skills learning, advocacy, and other aids. Effective communication approaches should be used. (See 'General considerations' above and 'Early interventions for intellectual disability' above.)

Components of care – Key aspects of care for children with ID include:

Longitudinal developmental surveillance – This expands upon standard pediatric surveillance and is coupled with direct interventions over the course of a child's life to advance and strengthen functional progress. (See 'Longitudinal developmental surveillance' above.)

Treatment of underlying causes, if present – Most causes of ID do not have a specific treatment or intervention. However, if a treatable underlying cause of ID is identified (eg, congenital hypothyroidism, treatable inborn error of metabolism), the child should be promptly treated to prevent further disability. (See 'Treatment of specific causes of intellectual disability' above.)

Treatment of comorbidities – Interventions for other neurodevelopmental or mental health disorders associated with ID include family counseling, education, condition-specific behavioral interventions, and psychopharmacologic therapy. The use of medications should be part of a clear, comprehensive psychosocial treatment plan that includes appropriate behavioral intervention, considers risks and benefits, identifies baseline behavioral functioning, targets behaviors and treatment goals, and provides evidence-based treatment with baseline and serial monitoring. (See 'Neurodevelopmental disorders and mental health problems' above.)

Behavior interventions – Behavior interventions are usually needed to improve social and behavioral functioning in children with ID and to address behavioral difficulties. These should be individualized and applied consistently. Desirable behaviors should be positively reinforced, and restraining or punitive aversive approaches should be avoided. (See 'Behavior intervention' above.)

Transition planning – Transition planning discussion should begin at or by 12 years of age, with a written transition plan in the child's record by 16 years of age. (See 'Transition planning' above.)

Legislative mandates – In the United States, federal legislation supports a range of services for children with ID. The Individuals with Disabilities Education Act (IDEA) provides for early intervention and special education for children with disabilities from birth to 21 years of age. All children with disabilities are mandated to receive a comprehensive education in the least restrictive environment, using an Individualized Education Plan (IEP), with measurable goals that are tailored to the individual's needs and abilities. (See 'Legislative mandates' above.)

Outcomes – The outcome for ID is variable and depends on multiple factors such as the cause and severity of ID, presence and severity of other associated conditions, environmental and social factors, and access to appropriate individualized services. (See 'Outcome' above.)

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Topic 6191 Version 37.0

References

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