Mental Retardation (Intellectual Disabilities)

Definition and introduction 3

Diagnosis/ Specific Tests 7

Specific needs 10

TR implications 11

Resources 17

Definition and introduction 20

Diagnosis/ Symptoms 21

Specific needs 29

Specific tests/ Research 30

TR implications 37

Resources 39

Mental Retardation
(Intellectual Disabilities)

Definition:

“Mental retardation refers to significantly sub-average general intellectual functioning existing concurrently with deficits in adaptive behavior and manifested during the developmental period” (AAMD)

“The conception of mental retardation not as an absolute trait expressed solely by the person but as an expression of the functional impact of the interaction between the person with limited intellectual and adaptive skills” (Grossman)

Not a disease nor a mental illness. It is a state of being. You can’t catch it from anyone.

It is important to note that mental retardation and intellectual disability should be precisely synonymous in definition and in all related classification because current federal and state laws contain the term mental retardation. This is the term used in public and law policy. This term is used to determine eligibility for state and federal programs and citizenship and legal status. As well as early care and education, training and employment, income, support, health care, and housing and zoning.

Intellectual disability is a disability characterized by significant limitation both in intellectual functioning (reasoning, learning, problem solving) and in adaptive behavior, which covers a range of everyday social and practical skills. This disability originates before the age of 18.

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  Intellectual Developmental Disorder (IDD) is a disorder that includes both a current intellectual deficit and a deficit in adaptive functioning with onset during the developmental period. The following 3 criteria must be met:
  
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  A.   Intellectual Developmental Disorder is characterized by deficits in general mental abilities such as reasoning, problem-solving, planning, abstract thinking, judgment, academic learning and learning from experience.
  
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  B.   Impairment in adaptive functioning for the individual’s age and sociocultural background. Adaptive functioning refers to how well a person meets the standards of personal independence and social responsibility in one or more aspects of daily life activities, such as communication, social participation, functioning at school or at work, or personal independence at home or in community settings. The limitations result in the need for ongoing support at school, work, or independent life.
  
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  C.   All symptoms must have an onset during the developmental period.
  

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  http://www.dsm5.org/proposedrevision/pages/proposedrevision.aspx?rid=384
  

When President Obama signed Rosa’s Law in October 2010, IDEA used the term “mental retardation”. Although the term changed, the definition did not.

Until Rosa’s Law was signed into law by President Obama in October 2010, IDEA used the term “mental retardation” instead of “intellectual disability.” Rosa’s Law changed the term to be used in future to “intellectual disability.” The definition itself, however, did not change. Accordingly, “intellectual disability” is defined as…

“…significantly sub average general intellectual functioning, existing concurrently with deficits in adaptive behavior and manifested during the developmental period, that adversely affects a child’s educational performance.”

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Providing services to help individuals with intellectual disabilities has led to a new understanding of how we define the term. After the initial diagnosis is made, we look at a person’s strengths and weaknesses. We also look at how much support or help the person needs to get along at home, in school, and in the community. This approach gives a realistic picture of each individual. It also recognizes that the “picture” can change. As the person grows and learns, his or her ability to get along in the world grows as well.

Causes:
Mental retardation affects about 1 - 3% of the population. There are many causes of mental retardation, but doctors find a specific reason in only 25% of cases.

A family may suspect mental retardation if the child's motor skills, language skills, and self-help skills do not seem to be developing, or are developing at a far slower rate than the child's peers. Failure to adapt (adjust to new situations) normally and grow intellectually may become apparent early in a child's life. In the case of mild retardation, these failures may not become recognizable until school age or later.

The degree of impairment from mental retardation varies widely, from profoundly impaired to mild or borderline retardation. Less emphasis is now placed on the degree of retardation and more on the amount of intervention and care needed for daily life.

Risk factors are related to the causes. Causes of mental retardation can be roughly broken down into several categories:

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  Infections (present at birth or occurring after birth)
  
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    Congenital CMV
    
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    Congenital rubella
    
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    Congenital toxoplasmosis
    
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    Encephalitis
    
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    HIV infection
    
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    Listeriosis
    
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    Meningitis
    
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  Chromosomal abnormalities
  
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    Chromosome deletions (such as cri du chat syndrome)
    
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    Chromosomal translocations (a gene is located in an unusual spot on a chromosome, or located on a different chromosome than usual)
    
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    Defects in the chromosome or chromosomal inheritance (such as fragile X syndrome, Angelman syndrome, Prader-Willi syndrome)
    
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    Errors of chromosome numbers (such as Down syndrome)
    
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  Environmental
  
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    Deprivation syndrome
    
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  Genetic abnormalities and inherited metabolic disorders
  
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    Adrenoleukodystrophy
    
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    Galactosemia
    
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    Hunter syndrome
    
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    Hurler syndrome
    
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    Lesch-Nyhan syndrome
    
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    Phenylketonuria
    
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    Rett syndrome
    
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    Sanfilippo syndrome
    
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    Tay-Sachs disease
    
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    Tuberous sclerosis
    
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  Metabolic
  
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    Congenital hypothyroid
    
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    Hypoglycemia (poorly regulated diabetes)
    
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    Reye syndrome
    
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    Hyperbilirubinemia (very high bilirubin levels in babies)
    
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  Nutritional
  
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    Malnutrition
    
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  Toxic
  
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    Intrauterine exposure to alcohol, cocaine, amphetamines, and other drugs
    
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    Lead poisoning
    
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    Methylmercury poisoning
    
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  Trauma (before and after birth)
  
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    Intracranial hemorrhage before or after birth
    
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    Lack of oxygen to the brain before, during, or after birth
    
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    Severe head injury
    
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  Unexplained (this largest category is for unexplained occurrences of mental retardation)
  

Doctors have found many causes of intellectual disabilities. The most common are:

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  Genetic conditions. 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).
  
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  Problems during pregnancy. An intellectual disability can result when the baby does not develop inside the mother properly. 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.
  
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  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.
  
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  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.
  

Impairments in at least two of the following areas: communication, self-care, home living, social/interpersonal skills, use of community resources, self-direction, functional academic skills, work, leisure, health, and safety.

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  Low attention span
  
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  Difficulties in self-regulation
  
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  Delayed social development
  
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  Delayed language development
  
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  Poor memory skills
  
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  Learned helplessness
  
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1. 
   Onset must occur before 18 years of age. In addition, the person must have
   
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   Below average general intellectual functioning. General intellectual functioning is defined by the intelligence quotient (IQ) obtained by assessment with one or more of the standardized, individually administered intelligence tests. The choice of testing instrument and interpretation of results should take into account factors that may affect test performance, such as sociocultural background, native language and associated communication, and motor and sensory handicaps. Specialized tests may be used to measure other aspects of development.

   Intellectual impairment is categorized by four degrees of severity. These classifications suggest the types of interventions that would be appropriate and offer clues as to long-term outcome.

   
   
   
   

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  Mild retardation: Mild retardation: IQ level 50-55 to approximately 70 (85% of people with mental retardation are in this category)
  
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  Moderate retardation: IQ level 35-40 to 50-55 (10% of people with mental retardation)
  
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  Severe retardation: IQ level 20-25 to 35-40 (3 - 4% of people with mental retardation)
  
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  Profound retardation: IQ level below 20 or 25 (1 - 2% of people with mental retardation)
  

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   Significant limitations in adaptive functioning in at least two of the following skill areas: communication, self-care, home living, social/interpersonal skills, use of community resources, self-direction, functional academic skills, work, leisure, health and safety.
   

http://www.aboutourkids.org/families/disorders_treatments/az_disorder_guide/mental_retardation/diagnosis

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

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

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

It is useful to evaluate deficits in adaptive functioning by using information from one or more reliable independent sources (e.g., teacher evaluation, and educational , developmental and medical histories). Several interview scales have been designed to measure adaptive functioning or behavior (e.g., Vineland Adaptive Behavior Scales and the American Association on Mental Retardation Adaptive Behavior Scale). As in the assessment of intellectual functioning, consideration should be given to the suitability of the instrument to the person's sociocultural background, education, associated handicaps, motivation and cooperation. In addition, some behaviors that would normally be considered maladaptive (e.g., dependency, passivity) may be evidence of good adaptation in the context of the particular life setting of a person with mental retardation.

As a group, people with mild mental retardation typically develop appropriate social and communication skills during the preschool years (ages 0-5 years), and have minimal impairment in sensorimotor areas. They often are not distinguishable from children without mental retardation until a later age. By their late teens, they can acquire academic skills up to approximately the sixth-grade level. During their adult years, they usually achieve social and vocational skills adequate for minimum self-support, but may need supervision, guidance and assistance, especially when under unusual social or economic stress. With appropriate supports, individuals with mild mental retardation can usually live successfully in the community, either independently or in supervised settings.

As a group, most people with moderate mental retardation acquire basic communication skills during the early childhood years. They profit from vocational training and, with moderate supervision, can attend to their personal care. They can also benefit from training in social and occupational skills but are unlikely to progress beyond the second-grade level in academics. They may learn to travel independently in familiar places. During adolescence their difficulties in recognizing social conventions may interfere with peer relationships. In their adult years, the majority are able to perform unskilled or semiskilled work under supervision in sheltered workshops or in the general work force. They adapt well to life in the community, usually in supervised settings.

As a group, people with severe mental retardation acquire little or no communicative speech during the early childhood years. During the school-age period, they may learn to talk and can be trained in basic self-care skills. Their ability to profit from instruction in pre-academic subjects is limited. They can become familiar with the alphabet and simple counting, and can master skills such as learning sight reading of some 'survival' words. In the adult years they may be able to perform simple tasks in closely supervised settings. Most adapt well to life in the community, in supervised group homes or with their families, unless they have an associated handicap that requires specialized nursing or other care.

As a group, people with profound mental retardation have an identified neurological condition that accounts for the mental retardation. During the early childhood years they have considerable impairment in sensorimotor functioning. Optimal development may occur in a highly structured environment with constant aid and supervision and an individualized relationship with a caregiver. Motor development and self-care and communication skills may improve if appropriate training is provided. Some can perform simple tasks in closely supervised and sheltered settings.

A child with mental retardation can do well in school but is likely to need individualized help. Fortunately, states are responsible for meeting the educational needs of children with disabilities.

For children up to age three, services are provided through an early intervention system. Staff work with the child's family to develop what is known as an Individualized Family Services Plan, or IFSP. The IFSP will describe the child's unique needs. It also describes the services the child will receive to address those needs. The IFSP will emphasize the unique needs of the family, so that parents and other family members will know how to help their young child with mental retardation. Early intervention services may be provided on a sliding-fee basis, meaning that the costs to the family will depend upon their income. In some states, early intervention services may be at no cost to parents.

For eligible school-aged children (including preschoolers), special education and related services are made available through the school system. School staff will work with the child's parents to develop an Individualized Education Program, or IEP. The IEP is similar to an IFSP. 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.

Many children with mental retardation 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:

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

http://www.ci.maryville.tn.us/mhs/MCSsped/mr.htm

The importance of etiology is that it can relate to health related problems and/or physical functioning. Early diagnosis of the etiology will allow the individual to receive treatment earlier on, which may offset the mental retardations

Mental retardation results due to biological, social, behavioral, and educational types of factors. Sometimes mental retardations are determined at conception due to hereditary disorders, chromosomal abnormalities, or biologically developed. This can become evident during the prenatal period, perinatal period, or postnatal period. Many conditions can contribute to the occurrence of mental retardation; however, about half the cases the reasons for the developmental of mental retardation are still unknown.

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 ID is confirmed, parents will want to get in touch with the early intervention system in their community. We’ll tell you how in a moment.

To access early intervention services in your area, consult NICHCY’s State Resource Sheet for your state. It’s available online at: http://nichcy.org/state-organization-search-by-state

There, you’ll find a listing for early intervention under the first section, State Agencies. The agency listed will be able to put you in contact with the early intervention program in your community.

To learn more about early intervention, including how to write the IFSP, visit NICHCY at: http://nichcy.org/babies/overview/

Just as IDEA 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, or IEP. The IEP is similar to an IFSP. 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 at NICHCY, which offers a wide range of publications on the topic. Enter our special education information at: http://nichcy.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.

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 IEP team and included in the IEP, if appropriate.

Some common changes that help students with intellectual disabilities are listed in the “Tips for Teachers” section of this fact sheet. The organizations listed at the end of this 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 consult NICHCY, beginning online at: http://nichcy.org/schoolage/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:

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

IDEA requires that, at the latest, transition planning for students with disabilities must begin no later than the first IEP to be in effect when they turn 16. The 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, visit NICHCY’s Transition pages, beginning at: http://nichcy.org/schoolage/transitionadult/

Tips for Teachers

Learn as much as you can about intellectual disability. The organizations listed below will help you identify techniques and strategies to support the student educationally. We’ve also listed some strategies below.

Recognize that you can make an enormous difference in this student’s life! Find out what the student’s strengths and interests are, and emphasize them. Create opportunities for success.

If you are not part of the student’s IEP team, ask for a copy of his or her IEP. The student’s educational goals will be listed there, as well as the services and classroom accommodations he or she is to receive. Talk to others in your school (e.g., special educators), as necessary. They can help you identify effective methods of teaching this student, ways to adapt the curriculum, and how to address the student’s IEP goals in your classroom.

Be as concrete as possible. Demonstrate what you mean rather than giving verbal directions. Rather than just relating new information verbally, show a picture. And rather than just showing a picture, provide the student with hands-on materials and experiences and the opportunity to try things out.

Break longer, new tasks into small steps. Demsonstrate the steps. Have the student do the steps, one at a time. Provide assistance, as necessary.

Give the student immediate feedback.

Teach the student life skills such as daily living, social skills, and occupational awareness and exploration, as appropriate. Involve the student in group activities or clubs.

Work together with the student’s parents and other school personnel to create and implement an IEP tailored to meet the student’s needs. Regularly share information about how the student is doing at school and at home.

Tips for Parents

Learn about intellectual disability. The more you know, the more you can help yourself and your child. See the list of organizations at the end of this fact sheet.

Be patient, be hopeful. Your child, like every child, has a whole lifetime to learn and grow.

Encourage independence in your child. For example, help your child learn daily care skills, such as dressing, feeding him or herself, using the bathroom, and grooming.

Give your child chores. Keep her age, attention span, and abilities in mind. Break down jobs into smaller steps. For example, if your child’s job is to set the table, first ask her to get the right number of napkins. Then have her put one at each family member’s place at the table. Do the same with the utensils, going one at a time. Tell her what to do, step by step, until the job is done. Demonstrate how to do the job. Help her when she needs assistance.

Give your child frequent feedback. Praise your child when he or she does well. Build your child’s abilities.

Find out what skills your child is learning at school. Find ways for your child to apply those skills at home. For example, if the teacher is going over a lesson about money, take your child to the supermarket with you. Help him count out the money to pay for your groceries. Help him count the change.

Find opportunities in your community for social activities, such as scouts, recreation center activities, sports, and so on. These will help your child build social skills as well as to have fun.

Talk to other parents whose children have an intellectual disability. Parents can share practical advice and emotional support. Visit NICHCY’s State-Specific Resources page and find a parent group near you. Look in the Disability-Specific section, under “intellectual disabilities.” State Sheets are online at:  http://nichcy.org/state-organization-search-by-state

Meet with the school and develop an IEP to address your child’s needs. Keep in touch with your child’s teachers. Offer support. Find out how you can support your child’s school learning at home.

Be proud of your child and take time to learn from the light they shine.

Q. How can therapeutic recreation help?

The purpose of therapeutic recreation is to facilitate the development, maintenance, and expression of an appropriate leisure lifestyle for the person with physical, mental, emotional, or social limitations.

Because people with mental retardation have impaired intellectual functioning, it is important for TR specialists to develop interventions and treatments that assist these individuals in developing functional skills necessary for participation in leisure pursuits. Therapeutic recreation involves the application of appropriate leisure intervention strategies to promote independent functioning for people with a variety of disabling conditions (ATRA, 1984). It is apparent that interventions encouraging the development of cognitive skills such as understanding and remembering rules and procedures, concentrating on the task, maintaining scores, and following directions should be the focus of TR treatment for people with mental retardation. However, it is important for TR specialists to remember to develop strategies that increase physical, social, and emotional development related to leisure participation.

Possible TR ideas: board games, card tricks, card games, follow the leader, ‘Simon says’, group activities, ‘win/loss’ situations.

It has been observed that people with mental retardation frequently experience limited opportunities to (1) control their lives, (2) express preference, and (3) participate in decision making. However, these skills can be learned with; with assistance, individuals with mental retardations can improve their abilities to state preferences, ask questions, ask for clarification when answers are unclear and can evaluate their choices to make selections that are meaningful to them.

Therefore, the importance of recreation participation in the lives of people with mental retardation—relative to having opportunities to make choices and decisions, as well as being able to participate in age-appropriate recreation activities—will be presented.

Common service settings:

The majority of people with mental retardation reside either in residential training centers, in group homes within the community, with their families at home in their community, or on their own in the community. Regardless of where the person lives, there are important concepts that TR specialists must consider when determining the best environment for the provision of leisure services. The following concepts are presented to encourage TR specialists to establish the most appropriate service setting for people with mental retardation:

1. least restrictive environment

2. deinstitutionalization

3. normalization

4. integration

5. inclusion

6. transition

Q. Where can I turn?
Organizations

The Arc of the United States
800.433.5255 | info@thearc.org | www.thearc.org
Find a local chapter near you: http://www.thearc.org/page.aspx?pid=2437

American Association on Intellectual and Developmental Disabilities
800.424.3688 | www.aaidd.org/
The AAIDD definition manual contains the world’s most current and authoritative information on intellectual disability, including best practice guidelines on diagnosing and classifying intellectual disability and developing a system of supports for people living with an intellectual disability.

Division on Developmental Disabilities (DDD)
A division of the Council for Exceptional Children, DD offers many publications and journals for professionals.
http://daddcec.org/Home.aspx

References

1 National Center on Birth Defects and Developmental Disabilities. (2005). Intellectual disability. Available online at: http://www.cdc.gov/ncbddd/actearly/pdf/parents_pdfs/IntellectualDisability.pdf

2 The Arc. (2009). Introduction to intellectual disabilities. Available online at: http://www.thearc.org/page.aspx?pid=2448

3 U.S. Department of Education. (2010). 29th annual report to Congress on the implementation of the Individuals with Disabilities Education Act, 2007 (Vol. 2). Washington, DC: Author. Available online at: http://www2.ed.gov/about/reports/annual/osep/index.html

Autism is usually first diagnosed in childhood. About 1 in 110 children is diagnosed with autism. Autism Spectrum Disorders are three to four times more common in boys than in girls.

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  High pain tolerance
  
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  Auditory hypersensitivity
  
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  Tactile defensiveness
  
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  Exhibit sensory behaviors such as crashing, squeezing, spinning, flapping
  

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  Onset before 30 months
  
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  Disturbance of response to sensory stimuli
  
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  Disturbance of speech, language, cognition, and nonverbal communication
  
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  Disturbance of capacity to relate appropriately to people, events, and objects
  
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  Disturbance of developmental rates and sequences
  

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  Qualitative impairment in social interaction
  
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  Qualitative impairments in communication
  
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  Restricted repetitive and stereotyped patterns of behavior, interests, and activities
  
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  Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play
  

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  Higher stress levels
  
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  Lower marital happiness
  
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  Higher divorce rate (twice as likely)
  
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  Isolation
  
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  Accept/Fight (jealousy, anger, sadness, emotional, practical, financial challenges
  
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  Effect on Families