Frequently Asked Questions
Q. What is an Intellectual Disability?
Intellectual disability originates before the age of 18. It is characterized by a limitation in two major areas of growth designated as: intellectual functioning (includes concepts such as reasoning, learning problem solving, an IQ of less than 70-75 etc.); and adaptive behavior (the use of everyday social, conceptual and practical living skills). Generically, it is a term used to designate an individual with limited mental functioning, poor communication and social skills and in some cases the inability to take care of themselves. These limitations cause such an individual to learn (functional academics) and develop (social skills) more slowly than a “typical” child. These children may take longer to talk, to walk or to take care of personal needs and hygiene. They may be able to learn but at a slower pace and in some extreme cases not learn at all. According to the AAIDD, individuals with intellectual disabilities when provided personalized and proper support over a sustained period of time generally have improved “life outcomes.”
Disabilities impact people in different ways and are primarily dependant on the severity of the disability and also the age of the person affected. Children with these disabilities take longer in learning to communicate, walking and taking care of their daily needs. Students with these disabilities take longer to learn (functional academics) in schools. Some adults are able to lead independent lives without much help and attend day program and work at jobs, while others need a considerable amount of support to lead even semi-independent lives. But there are a small percentage of those with intellectual disabilities who have serious lifelong complications and are not able to have a functional lifestyle. However, personalized support, education and early intervention are techniques that have proven helpful in ensuring that people with these intellectual/developmental disabilities lead productive and high functioning lifestyles.
According to the AAIDD, developmental disabilities are severe disabilities attributable to cognitive and/or physical impairments which appear before the age of 22, and are most likely going to be lifelong. They result in significant limitation in three or more of the following areas of major life activities: self-care, comprehension and language skills, learning, mobility, self-direction, capacity for independent living, economic self-sufficiency, and the ability to function independently without coordinated services. According to the Developmental Disabilities Act, this disability is a more severe and chronic condition.
Technically they are not the same. There are three major differences. The first difference is the age limit of onset (18 versus 22). The second is the severity of the limitation. Developmental disabilities are chronic and can be cognitive or physical or both while intellectual disabilities are mostly cognitive. Thirdly, classification as being developmentally disabled does not refer to the IQ requirement. According to the AAIDD, developmental disability is an umbrella term that includes intellectual disability as one of its sub-sets but the boundaries often blur as many individuals fall into both categories to differing degrees and for different reasons. It also includes other disabilities that are apparent during childhood. Some developmental disabilities are purely physical issues such as cerebral palsy or epilepsy, while others may have a condition that is both physical and includes an intellectual component such as Down syndrome or fetal alcohol syndrome. But many individuals with intellectual disabilities also meet the definition of the developmentally disabled.
None whatsoever. Intellectual disability covers the same people who in the past would have been diagnosed with mental retardation. Mental retardation was the term used in the past, and in some states is still in use to ensure the level of special protection afforded to people with intellectual disabilities. However, with the passage of Rosa’s Law in 2010, most states have officially changed this outdated term to intellectual disability. While intellectual disability is the preferred term, it is a matter of time before the term mental retardation, used in the past in state and federal documents and in some organizational descriptions, is completely eliminated and replaced by intellectual disability. While Rosa’s law changed the use of the term mental retardation to intellectual disability, the definition stayed the same, i.e. “ …significant sub-average general intellectual functioning, existing concurrently with deficits in adaptive behavior and manifesting during the development period, that adversely affects a child’s educational performance.”
Intellectual disability is the most common of all developmental disabilities. According to NICHCY, approximately 6.5 million people in the United States have an intellectual disability. More than half a million public school children between the ages of 6 to 18 have some level of intellectual disability for which they receive special education services under IDEA, the nation’s special education law. About 10 percent of children who need special education have some form of intellectual disability. Several critics however claim that prevalence studies do not identify all students with intellectual disabilities because children receive a diagnosis of learning disability, developmental delay, behavior disorder or autism instead of intellectual disability.
There are several signs that one should watch out for which may indicate that a child has intellectual disability. These include but are not limited to the following: sitting up, crawling or walking later than their peers; having trouble speaking; learning to talk later than others; having a hard time remembering things; having a hard time focusing and understanding basic instructions; having trouble understanding and following social rules; not fully comprehending the consequences of their actions; unable to think logically and solve problems. By no means is any one or more of these symptoms a confirmation of intellectual disability but it is a sign to consult a professional.
No. Evaluating an individual for intellectual disability is a complex process. There are two major components to intellectual disabilities: limitations in intellectual functioning and adaptive behavior. The IQ test is the primary tool to measure one of these components, i.e. intellectual functioning. Intelligence refers to a general mental capacity. It involves the ability to reason, plan, solve problems, think abstractly, comprehend complex ideas, and learn quickly and from experience. Intelligence is represented by Intelligent Quotient (IQ) scores obtained from standardized tests formulated and administered by trained professionals. The average score is 100. Scoring below 70 indicates a limitation in intellectual functioning and people scoring below 70 to 75 on these tests are believed to have an intellectual disability.
The other component, i.e. adaptive behavior is the collection of conceptual, social, and practical skills that are required in order to function in one’s daily life. To measure adaptive behavior, professionals look at what a child can do in comparison to other children of his or her age. These tests cover three basic types of skills aimed at determining independent living capabilities. Children are tested for conceptual skills which include money, time, and number concepts; language and literacy; and self-direction. They are tested for social skills which include interpersonal skills; social responsibility; self-esteem; gullibility; avoidance of victimization; and ability to follow rules and obey laws. Finally they are tested for practical skills which include personal activities of daily living; conducting household chores; mobility and toileting; using the telephone; occupational skills; managing money and personal safety. According to the AAIDD, a significant deficit in any one of these areas impacts the individual’s functioning enough to constitute a deficiency in adaptive behavior. In defining and assessing intellectual disability, AAIDD stresses that, in addition to an assessment of intellectual functioning and adaptive behavior, professionals must consider factors such as the community environment typical of an individual’s peers and culture; linguistic diversity; and cultural differences.
Intellectual disability is not a disease. You cannot catch it from anyone. It is also not a type of mental illness like depression. It is primarily caused by conditions that impair development of the brain before birth, during birth, or in the childhood years. Several hundred causes have been discovered, but in about one-third of the people affected, the cause remains unknown.
The known causes can be grouped into the following categories:
Genetic Conditions – Sometimes an intellectual disability is caused by abnormal genes inherited from parents, errors when genes combine, or other disorders of the genes caused during pregnancy by infections, overexposure to x-rays, and other factors. An example of a genetic disease associated with intellectual disability includes PKU (phenylketonuria), a single-gene disorder. Due to a missing or defective enzyme, children with PKU cannot process a part of a protein called phenylalanine. Without treatment, phenylalanine builds up in the blood and causes intellectual disability. Another example is Down syndrome which is the result of a chromosomal disorder. Chromosomal disorders happen sporadically and are caused by too many or too few chromosomes, or by a change in the structure of a chromosome. Finally, Fragile X syndrome, a single-gene disorder located on the X chromosome, is the leading genetic cause of intellectual disability.
Problems during pregnancy – An intellectual disability can result when a baby does not develop inside the mother properly due to issues with the way the fetus’s cells divide as it grows. The use of alcohol or drugs by the pregnant mother can cause intellectual disability. Alcohol is known to be the leading preventable cause of intellectual disability. Recent research has implicated smoking in increasing the risk of intellectual disability. Other risks include malnutrition, certain environmental toxins, and illnesses of the mother during pregnancy, such as toxoplasmosis, cytomegalovirus, rubella, and syphilis.
Problems at birth – Difficulties in the birthing process such as temporary oxygen deprivation or birth injuries may cause intellectual disabilities. Prematurity and low birth weight cause serious problems more often than any other condition.
Health problems after birth – Childhood diseases such as whooping cough, chicken pox, measles, and Hib disease that may lead to meningitis and encephalitis can damage the brain, as can injuries such as a blow to the head or near drowning. Lead, mercury, and other environmental toxins can cause irreparable damage to the brain and nervous system.
Poverty and cultural deprivation – Children growing up in poverty are at higher risk for malnutrition, childhood diseases, exposure to environmental health hazards, and often receive inadequate health care. These factors increase the risk of intellectual disability. Also, children in disadvantaged and impoverished areas are deprived of the common cultural and educational experiences provided to their peers. Research suggests that such under-stimulation can result in irreversible damage and can cause intellectual disability.
The health of a newborn depends on how healthy a mother is before pregnancy. Ideally, a would-be mother should obtain a general health assessment six months before pregnancy that includes: updating immunizations; reviewing the use of medications; reviewing diet and vitamin supplementation; considering genetic counseling; and stopping use of alcohol, cigarettes or other tobacco forms, illegal drugs, and legal drugs not approved by the doctor. Prenatal care should begin as soon as a mother gets pregnant. During pregnancy, the mother can protect and help in the healthy development of the fetus by: eating nutritious meals; avoiding alcohol, cigarettes and drugs; getting plenty of rest and sleep; avoiding people who are sick; not lifting heavy objects and exercising extreme cautious when doing household chores. Genetic counseling is something that families should consider before getting pregnant if the would-be mother is over 35 years old or has had two or more miscarriages or a baby die in infancy. Genetic counseling is also recommended if the child may inherit a genetic or chromosomal disorder because of a specific condition in the family such as partners being blood relatives or either partner being of a race or ethnic group with a higher incidence of a genetic condition.
Intellectual disability can be prevented during childhood by taking the following steps to keep children safe and healthy:
Childhood Immunizations – Protect children from at least six diseases that can lead to brain damage. These include measles, mumps, pertussis (whooping cough), Hib disease, varicella (chicken pox), and pneumococcal disease.
Injury Prevention – Avoid trauma or damage to the head and brain by using bicycle helmets, and safety/booster seats and seat belts in automobiles; preventing near-drowning; preventing falls, and protecting babies from severe shaking.
Professional Screening – Newborns should be screened to identify treatable genetic conditions.
Environmental Hazard Protection – Reduce exposure to lead, mercury, and other toxins that are known to cause brain damage. Protect children from household products that are poisonous.
Reducing the Incidence of Reye’s syndrome – Avoid giving medicines containing salicylate (aspirin); instead, use medicines containing acetaminophen (such as Tylenol) to reduce the brain damage caused by Reye’s syndrome.
During the past few decades, advances in scientific and behavioral research have been very successful in preventing many cases of intellectual disability. According to The Arc, every year in the United States:
– 250 cases of intellectual disability due to phenylketonuria (PKU) are prevented by newborn screening and dietary treatment;
– 1,000 cases of intellectual disability are prevented annually due to congenital hypothyroidism thanks to newborn screening and thyroid hormone replacement therapy;
– 1,000 cases of intellectual disability are prevented by the use of anti-Rh immune globulin to prevent Rh disease and severe jaundice in newborn infants;
– 5,000 cases of intellectual disability caused by Hib diseases are prevented by using the Hib vaccine;
– 4,000 cases of intellectual disability due to measles encephalitis are prevented thanks to the measles vaccine;
– Countless cases of intellectual disability caused by German measles during pregnancy are prevented thanks to the rubella vaccine.
While empirical data is not available on the effectiveness of other intervention techniques, it is well known that procedures such as removing lead from the environment reduce brain damage in children; mandating the use of child safety seats and bicycle helmets has reduced head trauma; and early intervention programs with high-risk infants and toddlers have shown positive effects on intellectual functioning. Early comprehensive prenatal care and preventive measures prior to and during pregnancy increases a would-be mother’s chances of preventing intellectual disability. The National Center on Birth Defects and Developmental Disabilities offers a plethora of information on how to prevent birth defects that are known causes of developmental disabilities.
Yes, there is! The Individuals with Disability Education Act (IDEA) is one of the major federal laws that ensure services to children with disabilities. IDEA was originally enacted by Congress in 1975 to ensure that children with disabilities had the opportunity to receive free appropriate public education, just like other children. The law has been revised several times to meet the needs of changing times. The most recent regulations were published in September 2011. IDEA governs how state and public agencies provide early intervention, special education, and related services to eligible infants, toddlers, children, and youth with disabilities. Infants and toddlers (Birth -2 Years old) receive early intervention services under IDEA Part C that starts with the Individualized Family Service Plan (IFSP). Children and youth (ages 3-21) receive special education and related services under IDEA Part B that starts with the Individualized Education Plan (IEP).
The major difference between the Individualized Family Service Plan (IFSP) and the Individualized Education Plan (IEP) is that the IFSP focuses on the children and their families and the services needed to help the family enhance the development of the child. The IEP focuses on the educational needs of the child. Once a child is evaluated and found to be eligible for early intervention services, a written plan called the IFPS is developed to determine the individualized services that an infant or toddler (up to age 2) with developmental disabilities will require. The plan involves the family and may include input from professionals and from the service provider as designated by the state. The IFSP is based on an in-depth assessment of a child’s needs and the needs and concerns of the family. It contains information on the child’s present level of development in all areas; the desired outcomes for the child and family; and the services that the child and family will receive to achieve those outcomes. These services are generally provided in the child’s home or “natural environment” which could include preschool, or community settings with young children with disabilities. The education of children with disability is ensured through Part C of IDEA and the IES is a written plan that includes, among other things, the special education services that the child will generally receive at a public school. It describes services provided in the “least restrictive environment” and an explanation of the extent, if any, that the child will not participate with typically developing children. It is a plan generally developed by the child’s parent and the school/district staff. The purpose of the IEP is to set reasonable learning goals for a child and to list the educational services that the school/district will provide for the child. It is an educational document for children ages 3 through 21. Information about these intervention services is available on the websites of IDEA and NICHCY.
Absolutely! These children can perform adequately but are likely to need the individualized help and attention available under the mandate of their IES Plan. Regardless of the mandates written into law, it is important that students with intellectual disabilities be involved in, and make progress in the general education curriculum. Such students should however be provided “supplementary aids and services” that may include special instructions, personnel, equipment, or other accommodations to ensure that they receive an education with non-disabled children to the maximum extent appropriate. In addition to their educational needs, many of these children will need help with their adaptive skills (needed to work and play at school and in their community) from their teachers, educators, parents, and caregivers. Finally, it is critical that the schools and families plan for the transition of the children into adulthood. IDEA requires that at the latest, this transitional planning begin no later than when they turn 16. Because intellectual deficiencies affect how quickly and efficiently an individual retains and learns new information and skills, the sooner the transition planning begins, the better off the student will be when leaving school.
Teachers and educators can help by:
- Learning as much as they can about intellectual disabilities. Talk to others with experience in these matters and identify effective methods of teaching the students, adapt the curriculum to the needs of these students, and determine methods to meet their IEP goals in the classroom.
- Recognizing that their proactive involvement will make a tremendous difference in the students’ lives. Find out what their strengths and interests are; emphasize those thereby creating opportunities for success.
- Demonstrating what you mean rather than giving verbal instructions. Clarify things by drawing or showing pictures. Breaking longer tasks into smaller steps; demonstrating the steps; and then enabling the student to accomplish each step.
- Giving the students immediate feedback.
- Teaching students life skills such as daily living and social skills, occupational awareness, and exploration as appropriate. Involving students in group activities and clubs.
- Working closely with the students’ parents and other school/district personnel to create and implement IEPs tailed to suit the students’ needs. Sharing information about the student’s progress with family and other appropriate personnel.
Parents and caregivers can help by:
- Learning as much as they can about intellectual disabilities. Talking to other parents whose children have intellectual disabilities. Parents can share practical advice and provide emotional support.
- Being patient and hopeful. Your children, like everyone else’s have a whole lifetime to learn and grow.
- Encouraging independence by helping your children learn daily care skills.
- Giving chores to your children while keeping the children’s age and ability in mind. Breaking down chores into manageable steps, and instructing them step by step until the chore is done. Demonstrating and enabling them to accomplish the job as and when required.
- Giving them frequent positive feedback to boost their self image and build their abilities.
- Meeting with school officials and developing a realistic IEP to address the children’s needs. Staying in touch with the student’s teachers and finding out how you can help support the learning goals at home.
- Applying the skills the children are learning at school at home such as applying simple math concepts when counting money at supermarkets, etc.
- Finding opportunities for social activities that the children can get involved with in their communities such as Special Olympics, scouts, and other community-based inclusive social/physical activities. Your children will have fun and build their social skills.
- Learning from your children. Those with intellectual disabilities have special skills and qualities.