What is mental retardation

Mental retardation is now called “intellectual disability” sometimes also called cognitive disabilities. According to American Association of Intellectual and Developmental Disabilities (https://aaidd.org/home), intellectual disability is defined as “a disability characterized by significant limitations in both intellectual functioning and in adaptive behavior, which covers many everyday social and practical skills. This disability originates before the age of 18” ¹. Intellectual disability is defined as a below-average intelligence (IQ) or mental ability coupled with lack of basic skills necessary for daily living, daily interaction (communication & social skills) and activities that is diagnosed before age 18. These limitations will cause a child to learn and develop more slowly than a typical child. Just like other health problems, an intellectual disability can be mild (smaller) or major (bigger). The bigger the disability, the more trouble someone will have learning and becoming an independent person. There are varying degrees of intellectual disability are identified according to their level of intelligence quotient (IQ). In the past, the term mental retardation was used to describe intellectual disability, but now mental retardation is no longer used because it hurts people’s feelings.

An intellectual disability is not a disease. You can’t catch an intellectual disability from anyone. It’s also not a type of mental illness, like depression. There is no cure for intellectual disabilities. However, most children with an intellectual disability can learn to do many things. It just takes them more time and effort than other children.

Levels of intellectual disability vary greatly in children – from a very slight problem to a very severe problem. Children with intellectual disability might have a hard time letting others know their wants and needs, and taking care of themselves. Intellectual disability could cause a child to learn and develop more slowly than other children of the same age. It could take longer for a child with intellectual disability to learn to speak, walk, dress, or eat without help, and they could have trouble learning in school. Comorbidities, including behavioral disorders, are common.

To help your child reach his or her full potential, it is very important to get help for him or her as early as possible! Having an intellectual disability doesn’t mean a person can’t learn. Ask anyone who knows and loves a person with an intellectual disability.

People with mental retardation represent a heterogeneous group with a varied range of highly complex needs ². Development of an individual with mental retardation depends on the type and extent of the underlying disorder, the associated disabilities, environmental factors, psychological factors, cognitive abilities and comorbid psychopathological conditions ³. This study ³ shows that as the level of mental retardation increases, social development decreases correspondingly. There was no impact of the age factor on the social development of mentally retarded children. Social development means acquisition of the ability to behave in accordance with social expectations. Becoming socialized involves 3 processes: i) learning to behave in socially approved ways, ii) playing approved social roles and iii) development of social attitudes. For people with mental retardation, their eventual level of social development has implication for the degree of support needed in their literacy arrangement and their integration in the community with increasing emphasis on mainstreaming the attainment of skills in personal, domestic and community functioning. It also contributes considerably to quality of life. Thus investigation of factors that may facilitate or inhibit social development assumes particular importance.

Intellectual functioning—also called intelligence—refers to general mental capacity, such as learning, reasoning, problem solving, and so on. One way to measure intellectual functioning is an IQ test. Generally, an IQ test score of around 70 or as high as 75 indicates a limitation in intellectual functioning.

Adaptive behavior is the collection of conceptual, social, and practical skills that are learned and performed by people in their everyday lives.

• Conceptual skills—language and literacy; money, time, and number concepts; and self-direction.
• Social skills—interpersonal skills, social responsibility, self-esteem, gullibility, naïveté (i.e., wariness), social problem solving, and the ability to follow rules/obey laws and to avoid being victimized.
• Practical skills—activities of daily living (personal care), occupational skills, healthcare, travel/transportation, schedules/routines, safety, use of money, use of the telephone.

Standardized tests can also determine limitations in adaptive behavior.

Age of Onset – Intellectual disability is one of several developmental disabilities—that is, there is evidence of the disability during the developmental period, which in the US is operationalized as before the age of 18.

But in defining and assessing intellectual disability, the American Association of Intellectual and Developmental Disabilities (https://aaidd.org/home) stresses that additional factors must be taken into account, such as the community environment typical of the individual’s peers and culture. Professionals should also consider linguistic diversity and cultural differences in the way people communicate, move, and behave.

Finally, assessments must also assume that limitations in individuals often coexist with strengths, and that a person’s level of life functioning will improve if appropriate personalized supports are provided over a sustained period.

Only on the basis of such many-sided evaluations can professionals determine whether an individual has mental retardation (intellectual disability) and tailor individualized support plans.

Mental retardation affects about 1% to 3% of of children in the United States ⁴. Males are more likely than females to be diagnosed with mental retardation. Poverty is a risk factor for mental retardation, especially for mild mental retardation ⁵. It is estimated that seven to eight million people in the United States have an intellectual disability, which means that 1 in 10 families are affected ⁶. More than 425,000 children (ages 3-21) have some level of intellectual disability and receive special education services in public school ⁷. In fact, 7% of the children who need special education have some form of intellectual disability ⁸.

Intellectual disability can be caused by a problem that starts any time before a child turns 18 years old – even before birth. Intellectual disability can be caused by injury, disease, or a problem in the brain. For many children, the cause of their intellectual disability is not known. Some of the most common known causes of intellectual disability – like Down syndrome, fetal alcohol syndrome, fragile X syndrome, genetic conditions, birth defects, and infections – happen before birth. Others happen while a baby is being born or soon after birth. Still other causes of intellectual disability do not occur until a child is older; these might include serious head injury, stroke, or certain infections.

There are many causes of intellectual disability, but doctors find a specific reason in only 25% of cases ⁹.

Risk factors are related to the causes. Causes of intellectual disability can include:

• Birth defects that affect the brain like hydrocephalus or cortical atrophy
• Chromosomal or genetic abnormalities (such as Down syndrome, Fragile X syndrome, Rett syndrome, Angelman syndrome, Cri-du-chat Syndrome, Prader-Willi Syndrome)
• Environmental
• Infections (before and after birth) e.g., congenital cytomegalovirus, Zika virus, rubella
• Metabolic (such as hyperbilirubinemia, or very high bilirubin levels in babies), phenylketonuria (PKU), galactosemia, and congenital hypothyroidism
• Nutritional (such as malnutrition)
• Toxic (intrauterine exposure to alcohol [Fetal Alcohol Syndrome], cocaine, amphetamines, and other drugs)
• Trauma (before and after birth)
• Unexplained (doctors do not know the reason for the person’s intellectual disability)

Mental retardation can also be the result of extreme lack of oxygen near the time of birth. Mental retardation may develop in an older child as the result of serious head injury, stroke, or infections such as meningitis.

Developmental tests are often used to assess the child with intellectual disability:

• Abnormal Denver developmental screening test
• Adaptive Behavior score below average
• Development way below that of peers
• Intelligence quotient (IQ) score below 70 on a standardized IQ test

Goal of treatment is to develop the person’s potential to the fullest. Special education and training may begin as early as infancy. This includes social skills to help the person function as normally as possible.

It is important for a specialist to evaluate the person for other physical and mental health problems. People with intellectual disability are often helped with behavioral counseling.

Discuss your child’s treatment and support options with your health care provider or social worker so that you can help your child reach his or her full potential.

Many people lead productive lives and learn to function on their own. Others need a structured environment to be most successful.

What can I do if I think my child may have intellectual disability?

Talk with your child’s doctor or nurse. If you or your doctor think there could be a problem, you can take your child to see a developmental pediatrician or other specialist, and you can contact your local early intervention agency (for children under 3) or public school (for children 3 and older). To find out who to speak to in your area, you can contact the Parent Center in your state (https://www.parentcenterhub.org/)

What’s happens at school?

During school, a child with an intellectual disability will probably need help. Some children have helpers that stay with them during the school day. They may be in special classes or get other services to help them learn and develop.

Someone with an intellectual disability often gets help in learning “life skills.” Life skills are the skills people need to take care of themselves as they get older, such as how to cook a meal or ride a public bus to get to work. Adults with intellectual disabilities often have jobs and learn to live independently or in a group home.

Kids with intellectual disabilities want to develop their skills to the best of their abilities. They want to go to school, play, and feel support from loving families and good friends.

What can you do?

If you know someone who has an intellectual disability, be a friend. How? Sometimes, it might mean telling a teacher if you see this person being teased or bullied. Other times, it can be as simple as saying something kind, like “Hey, I like your hat!”

If you can’t think of anything, just say, “hi.” It’s a little word that could make that person’s day.

Is mental retardation (intellectual disability) the same as developmental disabilities?

“Developmental Disabilities” is an umbrella term that includes intellectual disability but also includes other disabilities that are apparent during childhood.

Developmental disabilities are severe chronic disabilities that can be cognitive or physical or both. The disabilities appear before the age of 22 and are likely to be lifelong.Some developmental disabilities are largely physical issues, such as cerebral palsy or epilepsy. Some individuals may have a condition that includes a physical and intellectual disability, for example Down syndrome or fetal alcohol syndrome.

Intellectual disability encompasses the “cognitive” part of this definition, that is, a disability that is broadly related to thought processes. Because intellectual and other developmental disabilities often co-occur, intellectual disability professionals often work with people who have both types of disabilities.

Is mental retardation (intellectual disability) determined by just an IQ test?

No. The evaluation and classification intellectual disability is a complex issue. There are three major criteria for intellectual disability: significant limitations in intellectual functioning, significant limitations in adaptive behavior, and onset before the age of 18.

The IQ test is a major tool in measuring intellectual functioning, which is the mental capacity for learning, reasoning, problem solving, and so on. A test score below or around 70—or as high as 75—indicates a limitation in intellectual functioning.

Other tests determine limitations in adaptive behavior, which covers three types of skills:

• Conceptual skills—language and literacy; money, time, and number concepts; and self-direction
• Social skills—interpersonal skills, social responsibility, self-esteem, gullibility, naïveté (i.e., wariness), social problem solving, and the ability to follow rules, obey laws, and avoid being victimized
• Practical skills—activities of daily living (personal care), occupational skills, healthcare, travel/transportation, schedules/routines, safety, use of money, use of the telephone

American Association of Intellectual and Developmental Disabilities (https://aaidd.org/home) stresses that, in addition to an assessment of intellectual functioning and adaptive behavior, professionals must consider such factors as

• community environment typical of the individual’s peers and culture
• linguistic diversity
• cultural differences in the way people communicate, move, and behavior

Levels of mental retardation

• Mild – Having an IQ score of 50-55 to approximately 70-75. Individuals at this degree would require minimal to no assistance in their daily functioning. They go to school and even excel in the academic and athletics. When they become adults, they can go find a job and support themselves.
• Moderate – IQ score between 30-40 to 50-55. Individuals at this degree will need intermittent and extensive support and assistance as necessary.
• Severe – IQ score between 20-25 to 35-40. Extensive supports are provided, usually involving assistance on a daily basis in a number of settings.
• Profound – IQ score below 2-25. Constant assistance is needed as the individual lacks the mental and physical capacity to take care of himself, to include life-sustaining measures.

Table 1. Classifications of Intellectual Disability Severity

Severity Category	Approximate Percent Distribution of Cases by Severity	DSM-4 Criteria (severity levels were based only on IQ categories)	DSM-5 Criteria (severity classified on the basis of daily skills)	AAIDD Criteria (severity classified on the basis of intensity of support needed)	SIS Listings Criteria (The SIS listings do not specify severity levels, but indicate different standards for meeting or equaling listing level severity.)
Mild	85%	Approximate IQ range 50–69	Can live independently with minimum levels of support.	Intermittent support needed during transitions or periods of uncertainty.	IQ of 60 through 70 and a physical or other mental impairment imposing an additional and significant limitation of function
Moderate	10%	Approximate IQ range 36–49	Independent living may be achieved with moderate levels of support, such as those available in group homes.	Limited support needed in daily situations.	A valid verbal, performance, or full-scale IQ of 59 or less
Severe	3.5%	Approximate IQ range 20–35	Requires daily assistance with self-care activities and safety supervision.	Extensive support needed for daily activities.	A valid verbal, performance, or full-scale IQ of 59 or less
Profound	1.5%	IQ <20	Requires 24-hour care.	Pervasive support needed for every aspect of daily routines.	A valid verbal, performance, or full-scale IQ of 59 or less

Footnote: DSM = Diagnostic and Statistical Manual of Mental Disorders of the American Psychiatric Association, AAIDD = American Association on Intellectual Developmental Disabilities; SIS = Supports Intensity Scale

[Source ⁵ ]

Types of mental retardation

Around three percent of the American population suffers from some level of intellectual disability. Such individuals can lead a better life with proper support, care, and guidance from health care providers and family.

The majority of people with intellectual disability are classified as having mild intellectual disabilities. Individuals with mild mental retardation are slower in all areas of conceptual development and social and daily living skills. These individuals can learn practical life skills, which allows them to function in ordinary life with minimal levels of support. Individuals with moderate mental retardation can take care of themselves, travel to familiar places in their community, and learn basic skills related to safety and health. Their self-care requires moderate support.

Mild mental retardation

The following criteria must be met in order to diagnose an individual with mild intellectual disabilities:

• Has an IQ between 50-70
• Does not have any unusual physical signs
• Takes slightly longer than normally expected in all aspects, such as takes longer to learn how to talk and communicate
• Is capable of independent self-care
• Is capable of learning practical skills
• Knowledge of reading, writing, and math skills are limited to grade 3-6
• Is capable of social interactions, is communicative, and conforms socially
• Is capable of functioning in society

Moderate mental retardation

The following criteria must be met in order to diagnose an individual with moderate intellectual disabilities:

• Has an IQ between 35-49
• Could have unusual physical signs
• Is noticeably delayed in all aspects, such as speech, reading, and writing
• Is capable of grasping simple communicative skills
• Is capable of learning basic health, self-care, and safety skills
• Can perform simple activities and supervised tasks
• Is capable of traveling unaccompanied to familiar places

Severe mental retardation

The following criteria must be met in order to diagnose an individual with severe intellectual disabilities:

• Has an IQ between 20-34
• Is noticeably motor impaired
• Is significantly delayed in certain areas such as walking
• Has little or absolutely no communicative skills, but has some ability to understand speech and respond to a small extent
• Is capable of being taught daily and repetitive activities
• May be taught to carry out simple self-care activities
• Requires supervision and directions in social settings

Severe mental retardation manifests as major delays in development, and individuals often have the ability to understand speech but otherwise have limited communication skills ¹⁰. Despite being able to learn simple daily routines and to engage in simple self-care, individuals with severe mental retardation need supervision in social settings and often need family care to live in a supervised setting such as a group home.

Profound mental retardation

The following criteria must be met in order to diagnose an individual with profound intellectual disabilities:

• Has an IQ lesser than 20
• Is significantly slower and delayed in all aspects
• There is presence of congenital abnormalities
• Needs to be supervised closely
• Requires the care of an attendant
• May respond positively to physical and social activities, if made to practice on a regular basis
• Is incapable of performing self-care activities

Persons with profound intellectual disability often have congenital syndromes ¹⁰. These individuals cannot live independently, and they require close supervision and help with self-care activities. They have very limited ability to communicate and often have physical limitations. Individuals with mild to moderate disability are less likely to have associated medical conditions than those with severe or profound intellectual disability.

Mental retardation signs and symptoms

Mental retardation (intellectual disability) begins in the first two decades of life. The age and characteristics of onset depend on the cause of the disability and the severity of the neuropsychiatric dysfunction. The identification of children with more severe mental retardation (what previously would have been termed severe and profound mental retardation) typically occurs early in life. These children often have dysmorphic features and associated medical conditions and higher rates of behavioral and psychiatric disturbances. Individuals with severe intellectual disability may show delayed motor, language, and social accomplishments within the first 2 years of life. Individuals with mild intellectual disability may not be recognized until early school age because that is when their difficulties with academic learning become apparent.

Depending on its cause, mental retardation may be stable and nonprogressive or it may worsen with time. After early childhood, the disorder is chronic and usually lasts an individual’s lifetime; however, the severity of the disorder may change with age. For example, visual or hearing difficulties, epilepsy, childhood psychological or head trauma, substance abuse, and other medical conditions may affect the course of the disorder. Conversely, an early intervention may improve adaptive skills.

Children with mental retardation (intellectual disabilities) may take longer to learn to speak, walk, and take care of their personal needs such as dressing or eating. They are likely to have trouble learning in school. They will learn, but it will take them longer. There may be some things they cannot learn.

As a family, you may suspect your child has an intellectual disability when your child has any of the following:

• Lack of or slow development of motor skills, language skills, and self-help skills, especially when compared to peers
• Failure to grow intellectually or continued infant-like behavior
• Lack of curiosity
• Problems keeping up in school
• Failure to adapt (adjust to new situations)
• Difficulty understanding and following social rules

Signs of intellectual disability can range from mild to severe.

Signs of mental retardation

Usually, the more severe the degree of intellectual disability, the earlier the signs can be noticed. However, it might still be hard to tell how young children will be affected later in life.

There are many signs of intellectual disability. For example, children with intellectual disability may:

• sit up, crawl, or walk later than other children
• learn to talk later, or have trouble speaking
• find it hard to remember things
• have trouble understanding social rules
• have trouble seeing the results of their actions
• have trouble solving problems
• have trouble thinking logically.

Comorbidities

Many neurodevelopmental, psychiatric, and medical disorders co-occur with mental retardation, especially communication disorders, learning disabilities, cerebral palsy, epilepsy, and various genetically transmitted conditions ¹¹. Estimates of the rates of psychiatric coexisting conditions vary. For many years there was an underestimation of the increased risk for development of comorbid conditions (“diagnostic overshadowing”). As research was conducted, it became clear that the risk for comorbid conditions is greater than previously believed. For example, Rutter and colleagues ¹² reported rates of 30 to 42 percent of psychopathology in children with “mental retardation” compared with 6 to 7 percent in children without the disability. Gillberg and colleagues ¹³ reported that 57 percent of subjects with mild and severe “mental retardation” met diagnostic criteria for affective, anxiety, conduct, schizophrenia, and somatoform disorders and attention deficit hyperactivity disorder (ADHD). Most studies indicate a four- to fivefold increase in mental health problems among individuals with mental retardation. In general, at least 25 percent of persons with mental retardation may have significant psychiatric problems, with the population experiencing, in particular, significantly increased rates of schizophrenia, depression, and ADHD ¹⁴.

What causes mental retardation

Mental retardation (intellectual disabilities) happen because the brain gets injured or a problem prevents the brain from developing normally. These problems can happen while the baby is growing inside his or her mom, during the baby’s birth, or after the baby is born. Many times, though, doctors don’t know the cause.

Here are some problems that can cause intellectual disabilities:

• Genetic conditions. There’s a problem with the baby’s genes, which are in every cell and determine how the body will develop. Genes are inherited from both parents, so a baby might receive genes that are abnormal or the genes might change while the baby is developing. Sometimes an intellectual disability is caused by abnormal genes inherited from parents, errors when genes combine, or other reasons. Examples of genetic conditions are Down syndrome, fragile X syndrome, and phenylketonuria (PKU).
• Problems during pregnancy. An intellectual disability can result when the baby does not develop inside the mother properly. Sometimes, the mom might get an illness or infection that can harm the baby. Taking certain medicines while pregnant can cause problems for the baby. Drinking alcohol or taking illegal drugs also can damage a baby’s developing brain. For example, there may be a problem with the way the baby’s cells divide as it grows. A woman who drinks alcohol or gets an infection like rubella during pregnancy may also have a baby with an intellectual disability.
• Problems at birth. If a baby has problems during labor and birth, such as not getting enough oxygen, he or she may have an intellectual disability.
• The baby is born way too early.
• After being born, the baby gets a serious brain infection.
• Health problems. Diseases like whooping cough, the measles, or meningitis can cause intellectual disabilities. They can also be caused by extreme malnutrition (not eating right), not getting enough medical care, or by being exposed to poisons like lead or mercury.
• A serious head injury can hurt the brain and cause intellectual disabilities at any point during life. Some of these disabilities are temporary and others can be permanent. (That’s why it’s important to wear your bike helmet and always wear a seatbelt in the car!)

Doctors figure out that someone has an intellectual disability by testing how well the person thinks and solves problems. If a problem is spotted, doctors and other professionals can work with the family to decide what type of help is needed.

Mental retardation prevention

Mental retardation is not preventable in most cases. However, some metabolic conditions such as phenylketonuria (PKU), galactosemia, and congenital hypothyroidism can be treated before the onset of mental retardation. These conditions can be identified through a simple blood test or heel prick (to draw blood) after the baby is born. There are also tests during pregnancy to assess whether a baby has chromosomal abnormalities such as Down syndrome.

• Genetic. Genetic counseling and screening during pregnancy can help parents understand risks and make plans and decisions.
• Social. Nutrition programs can reduce disability associated with malnutrition. Early intervention in situations involving abuse and poverty will also help.
• Toxic. Preventing exposure to lead, mercury, and other toxins reduces the risk of disability. Teaching women about the risks of alcohol and drugs during pregnancy can also help reduce risk.
• Infectious diseases. Certain infections can lead to intellectual disability. Preventing these diseases reduces the risk. For example, rubella syndrome can be prevented through vaccination. Avoiding exposure to cat feces that can cause toxoplasmosis during pregnancy helps reduce disability from this infection.

In the United States, newborns are screened for metabolic disorders soon after birth, but different states test for different conditions. Parents can request that their baby be checked for any conditions that have an available test. Children with metabolic conditions are usually treated with medicine or put on a special diet. If the treatment is started very soon after the child is born and continues as long as needed, the child will probably not develop mental retardation. Fetal Alcohol Syndrome can also be prevented: pregnant women should not drink alcohol.

Mental retardation diagnosis

Intellectual disabilities are diagnosed by looking at two main things. These are:

• the ability of a person’s brain to learn, think, solve problems, and make sense of the world (called IQ or intellectual functioning); and
• whether the person has the skills he or she needs to live independently (called adaptive behavior, or adaptive functioning).

To diagnose an intellectual disability, professionals look at the person’s mental abilities (IQ) and his or her adaptive skills. The diagnosis of mental retardation requires evidence of impairments in real life (adaptive) skills; thus all people with mental retardation demonstrate functional impairment ⁵. These adaptive abilities relate to such things as understanding rules, the ability to navigate the tasks of daily living, and participation in family, school, and community activities.

Intellectual functioning, or IQ, is usually measured by a test called an IQ test. The average score is 100. People scoring below 70 to 75 are thought to have an intellectual disability ¹⁵.

To measure adaptive behavior, professionals look at what a child can do in comparison to other children of his or her age. Certain skills are important to adaptive behavior. These are:

• daily living skills, such as getting dressed, going to the bathroom, and feeding one’s self;
• communication skills, such as understanding what is said and being able to answer;
• social skills with peers, family members, adults, and others.

Various assessments of such skills are available, such as the Vineland Adaptive Behavior Scales which is a widely used instrument ¹⁶. Assessment of these skills helps to plan remediation, i.e., teaching specific skills and working on generalization of skills.

Mental retardation treatment

Treatments for mental retardation generally fall into three main categories: (1) treatments that address or mitigate any underlying cause of mental retardation, such as restricting phenylalanine in the diet of patients who have phenylketonuria; (2) treatments of comorbid physical and mental disorders with the aim of improving the patient’s functioning and life skills, such as targeted pharmacologic treatments of behavioral disorders among children with fragile X syndrome ¹⁷; and (3) early behavioral and cognitive interventions, special education, habilitation, and psychosocial supports ¹⁸.

Guidelines for the assessment and management of mental retardation generally focus on psychosocial interventions. Challenges vary with the age of the individual and the level of impairment as well as with the presence of other associated conditions ¹⁹. Because individuals with mental retardation can manifest the full range of psychiatric disorders, medications can sometimes help manage these disorders ²⁰. However, the cognitive and verbal limitations of patients with mental retardation make the psychiatric diagnostic process difficult. These disorders frequently respond to standard psychiatric treatment, i.e., medication and psychosocial support, although in the main mental retardation makes treatment more complex.

Help for Babies and Toddlers

When a baby is born with an intellectual disability, his or her parents should know that there’s a lot of help available—and immediately. Shortly after the diagnosis of mental retardation is confirmed, parents will want to get in touch with the early intervention system in their community.

Early intervention is a system of services designed to help infants and toddlers with disabilities (until their 3rd birthday) and their families. It’s mandated by Individuals with Disabilities Education Act. Staff work with the child’s family to develop what is known as an Individualized Family Services Plan. The Individualized Family Services Plan will describe the child’s unique needs as well as the services he or she will receive to address those needs. The Individualized Family Services Plan will also emphasize the unique needs of the family, so that parents and other family members will know how to help their young child with intellectual disability. Early intervention services may be provided on a sliding-fee basis, meaning that the costs to the family will depend upon their income.

To access early intervention services in your area, ask your child’s pediatrician for a referral or call the local hospital’s maternity ward and ask for contact information for your local services program.

To learn more about early intervention, including how to write the Individualized Family Services Plan, visit Center for Parent Information and Resources hub, starting at: https://www.parentcenterhub.org/babies/

Help for School-Aged Children

Just as Individuals with Disabilities Education Act requires that early intervention be made available to babies and toddlers with disabilities, it requires that special education and related services be made available free of charge to every eligible child with a disability, including preschoolers (ages 3-21). These services are specially designed to address the child’s individual needs associated with the disability—in this case, an intellectual disability.

School staff will work with the child’s parents to develop an Individualized Education Program (IEP). The Individualized Education Program (IEP) is similar to an Individualized Family Services Plan. It describes the child’s unique needs and the services that have been designed to meet those needs. Special education and related services are provided at no cost to parents.

To access special education services for a school-aged child in your area, get in touch with your local public school system. Calling the elementary school in your neighborhood is an excellent place to start.

There is a lot to know about the special education process, much of which you can learn here at the Center for Parent Information and Resources, which offers a wide range of publications on the topic. Start in at: https://www.parentcenterhub.org/schoolage/

Educational Considerations

A child with an intellectual disability can do well in school but is likely to need the individualized help that’s available as special education and related services. The level of help and support that’s needed will depend upon the degree of intellectual disability involved.

General education. It’s important that students with intellectual disabilities be involved in, and make progress in, the general education curriculum. That’s the same curriculum that’s learned by those without disabilities. Be aware that Individuals with Disabilities Education Act does not permit a student to be removed from education in age-appropriate general education classrooms solely because he or she needs modifications to be made in the general education curriculum.

Supplementary aids and services. Given that intellectual disabilities affect learning, it’s often crucial to provide supports to students with intellectual disability in the classroom. This includes making accommodations appropriate to the needs of the student. It also includes providing what Individuals with Disabilities Education Act calls “supplementary aids and services.” Supplementary aids and services are supports that may include instruction, personnel, equipment, or other accommodations that enable children with disabilities to be educated with non-disabled children to the maximum extent appropriate.

Thus, for families and teachers alike, it’s important to know what changes and accommodations are helpful to students with intellectual disabilities. These need to be discussed by the Individualized Education Program (IEP) team and included in the Individualized Education Program (IEP), if appropriate.

Some common changes that help students with intellectual disabilities are listed in the “Tips for Teachers” section below. The organizations listed at the end of the fact sheet also offer a great deal of information on ways to help children with intellectual disabilities learn and succeed in school. And you can also take a moment and skim through Supports, Modifications, and Accommodations for Students, at: https://www.parentcenterhub.org/accommodations/

Adaptive skills. Many children with intellectual disabilities need help with adaptive skills, which are skills needed to live, work, and play in the community. Teachers and parents can help a child work on these skills at both school and home. Some of these skills include:

• communicating with others;
• taking care of personal needs (dressing, bathing, going to the bathroom);
• health and safety;
• home living (helping to set the table, cleaning the house, or cooking dinner);
• social skills (manners, knowing the rules of conversation, getting along in a group, playing a game);
• reading, writing, and basic math; and
• as they get older, skills that will help them in the workplace.

Transition planning. It’s extremely important for families and schools to begin planning early for the student’s transition into the world of adulthood. Because intellectual disability affects how quickly and how well an individual learns new information and skills, the sooner transition planning begins, the more can be accomplished before the student leaves secondary school.

Individuals with Disabilities Education Act requires that, at the latest, transition planning for students with disabilities must begin no later than the first Individualized Education Program (IEP) to be in effect when they turn 16. The Individualized Education Program (IEP) teams of many students with intellectual disabilities feel that it’s important for these students to begin earlier than that. And they do.

For more information about transition planning, dive into the Transition Suite of pages, beginning at: https://www.parentcenterhub.org/transitionadult/

References

1. Definition of Intellectual Disability. https://aaidd.org/intellectual-disability/definition
2. Bouras N, Jacobson J. Mental health care for people with mental retardation: a global perspective. World Psychiatry. 2002;1(3):162-5. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1489845/
3. Kumar I, Singh AR, Akhtar S. Social development of children with mental retardation. Ind Psychiatry J. 2009;18(1):56-9. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3016702/
4. Mental Retardation. https://www.cdc.gov/healthcommunication/toolstemplates/entertainmented/tips/MentalRetardation.html
5. Committee to Evaluate the Supplemental Security Income Disability Program for Children with Mental Disorders; Board on the Health of Select Populations; Board on Children, Youth, and Families; Institute of Medicine; Division of Behavioral and Social Sciences and Education; The National Academies of Sciences, Engineering, and Medicine; Boat TF, Wu JT, editors. Mental Disorders and Disabilities Among Low-Income Children. Washington (DC): National Academies Press (US); 2015 Oct 28. 9, Clinical Characteristics of Intellectual Disabilities. Available from: https://www.ncbi.nlm.nih.gov/books/NBK332877
6. Reynolds, T., Zupanick, C.E., & Dombeck, M. (2013, May). Onset and prevalence of intellectual disabilities. https://www.mentalhelp.net/articles/onset-and-prevalence-of-intellectual-disabilities/
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