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Information about Intellectual/Developmental Disability

• What are Intellectual and Developmental Disabilities?
  
• What are the causes ofIntellectual and Developmental Disabilities?
  
• What are the characteristics of Intellectual and Developmental Disabilities?
  
• What are the statistics concerning Intellectual and Developmental Disabilities?
  
• Classification
  
• Tests and Prognosis
  
• Prevention
  
• Awareness
  
• Viewpoint
  
• On-line Discussion
  
• Needs and Solutions
  
  • Treatment and Rehabilitation
    
• Learn More about Amputation and Limb Differences
  
• References
  

What are Intellectual and Developmental Disabilities?

Intellectual Impairment
• Affects one’s ability to reason and understand.

• Delayed development, difficulty in adapting to new situations or problems with learning and remembering.

• An intellectual disability is a disability that involves significant limitations both in intellectual functioning and in adaptive behavior, which covers many everyday social and practical skills. The term "Intellectual" disability is synonymous with the term "mental retardation" and is beginning to be considered the preferable term.

• Intellectual impairment is a developmental disability.

Developmental Disability

• This is an umbrella term that includes intellectual disability but also includes physical disabilities. Some developmental disabilities can be strictly physical, such as blindness from birth. Some individuals have both physical and intellectual disabilities stemming from genetic or other physical causes (e.g., Down Syndrome, fetal alcohol syndrome). Sometimes intellectual disabilities can stem from nonphysical causes, such as the level of child stimulation and adult responsiveness. (AAIDD)

• The Department of Health and Human Services Centers for Disease Control and Prevention identify the following mental and/or physical impairments that can cause developmental disability and define those as severe problems with major life activities such as language, mobility, learning, self-help, and independent living that may occur anytime during development up to 22 years of age:
  • Intellectual Disability
  • Autism Spectrum Disorders
  • Cerebral Palsy
  • Hearing Loss
  • Vision Impairment
• According to the Developmental Disabilities Assistance and Bill of Rights Act of 1990 (PL 101-496) 2000 (PL 106-402)
  (A) IN GENERAL the term "developmental disability" means a severe chronic disability of and individual that -
  (1) is attributable to a mental or physical impairment or combination of mental and physical impairments:
  • (II) is manifested before the person attains age twenty-two

  • (III) is likely to continue indefinitely

  • (IV) results in substantial functional limitations in three or more of the following areas of major life activity:

    (I) self-care

    (II) receptive and expressive language

    (III) learning

    (IV) mobility, self-direction

    (V) capacity for independent living

    (VI) economic sufficiency

    (VII) reflects the person's need for combination and sequence of special interdisciplinary, or generic services, individualized supports, or other forms of services which are of lifelong or extended duration and are individually planned and coordinated.

  (B) INFANTS AND YOUNG CHILDREN-- individual from birth to age 9, inclusive who has substantial developmental delay or specific congenital or acquired condition, may be considered to have developmental disability without meeting (3) or more of the criteria described in clauses (I) through (v) of subparagraph (A) If the individual, without services and supports, has a high probability of meeting those criteria later in life.

What are the causes of Intellectual and Developmental Disabilities?

• Intellectual disability originates before the age of 18 and encompasses a wide range of conditions, types, and levels.
• Intellectual disability is caused by factors that can be physical, genetic, social, disease, injury, or brain abnormality. (AAIDD)

Classifications:

There are two groups.
• Congenital: most cases fall into this group, some causes are metabolic disturbance (phenylketonuria (PKU), galactosemia, and congenital hypothyroidism, or kernicterus from jaundice), hormone deficiencies, abnormal chromosome count, maternal infections, protozoal infection (Down syndrome, fetal alcohol syndrome, and fragile X syndrome, genetic conditions (such as Cri-du-chat syndrome or Prader-Willi syndrome), infections (such as congenital cytomegalovirus), or birth defects that affect the brain (such as hydrocephalus or cortical atrophy) and (asphyxia happens while a baby is being born or soon after birth.
• Acquired: damage to the brain, or from the environment, serious head injury, stroke, or certain infections such as meningitis.

Tests/Prognosis

Intellectual Functioning is measured by IQ.

Intellectual disability cannot be determined by an IQ test, but the IQ test is a major tool in measuring intellectual functioning, that is, mental capacity for learning, reasoning, problem solving, and so on. A test score of around 70—or as high as 75—indicates a limitation in intellectual functioning.
1. 78% - Mild IQ = 52 - 67
2. 18% - Moderate IQ = 36 - 51
3. 3.5% - Severe IQ = 20 - 35
4. .5% - Profound IQ = 00 - 19 or total lack of awareness
Adaptive behavior
• Diagnosis of intellectual impairment includes intellectual functioning, a marked impairment in the ability to adapt to cultural demands of society, ability to adapt to environmental demands in three areas:
  
  1. Ability to accomplish tasks demanded by the community.
  2. Personal responsibility and willingness to undertake such tasks.
  3. Social responsibility and ability to behave appropriately in terms of cultural expectations.

• Tests determine limitations in adaptive behavior, which cover 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 (AAIDD)

What are the characteristics of Intellectual and Developmental Disabilities?

• Education - Academic Development - "Students with mild intellectual disabilities tend to have more general, delayed development in academic, social, and adaptive skills. This delayed development is reflected in low achievement across content and skill areas as well as significantly lower scores on measures of intelligence and adaptive behavior when compared with students who are not identified with intellectual disabilities." A delay in foundational skills in reading and math, coupled with delays in language skills, then results in delays in other academic areas that require the use of these skills (e.g., writing, spelling, science). Students with intellectual disabilities continue to lag behind age-level peers in academic achievement throughout their school years. However, many students with mild intellectual disabilities develop basic literacy skills and functional mathematics skills. For example, most students with mild intellectual disabilities learn basic computational skills and functional arithmetic skills related to money, time, and measurement. However, most of these students continue to have difficulty with more advanced skills related to content, such as mathematical reasoning and applying concepts to solve problems (Beirne-Smith et al., 2006). Students with intellectualy disabilities and delayed language development who are poor readers often have poor phonological language skills. Teachers need to address phonological training and vocabulary development. (Rosenber et al., 2008) Eventually students with intellectual disabilities can develop basic literacy and functional arithmetic skills, although they may continue to have difficulty with more advanced skills.

• Cognitive - Difficulty with Attention, Memory and Generalization, Problem Solving, Concrete to Abstract or miss literal and figurative language, delays in speech development, difficulty with auditory perception, and difficulty with visual perception.

• Social Skills Performance - behavior problems, immature, miss verbal/non-verbal clues, obsessive/compulsive behaviors, difficulty learning social rules.

• Adaptive Skills may have trouble with hygiene skills, organization and simple language.

• The limitations of cognitive functioning will cause a child with an intellectual disability to learn and develop more slowly than a child without an intellectual disability. Children may take longer to learn language, develop social skills, and take care of their personal needs such as dressing or eating. Learning will take them longer, require more repetition, and skills may need to be adapted to their learning level. Nevertheless, virtually every child is able to learn, develop and become participating members of the community. http://www.wabashcenter.com/index/whoweserve/intellectualdisability.asp Wabash Center (10/14/2010)

• People with intellectual disability are "people first" and all people have both strengths and areas of needled support. vast diversity among people as a function of cultural, linguistic, ethnic, and economic factors. Within each individual, limitations often coexist with strengths. with appropriate personalized supports over a period of sustained effort anyone will generally improve. (IDER)

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What are the statistics regarding Intellectual and Developmental Disabilities?

• According to the President’s Committee for People with Intellectual Disabilities,and the 1990 census an estimated six to eight million Americans of all ages experience intellectual and developmental disability.
• Intellectual disabilities affect about one in ten families in the United States.
• Intellectual disability is 12 times more common than cerebral palsy and affects 100 times as many people as total blindness.
• Approximately 2% of the U.S. population are intellectual impaired.

Prevention

• A woman can prevent FAS Fetal alcohol syndrome by not drinking when she is pregnant.
• Test your newborn soon after birth by a simple blood test for certain metabolic conditions, such as phenylketonuria (PKU), galactosemia, and congenital hypothyroidism. Women with PKU could follow a special diet when they are pregnant. If they do not follow their diets, their babies are very likely to be affected by intellectual disability and other birth defects. Children that do have these conditions are usually treated with medicine or put on a special diet, started soon enough after the child is born and continues as long as needed.
• Use phototherapy to help your newborn's body eliminate yellow pigment bilirubin or jaundice caused from the liver overproducing called Kernicterus. Though jaundice may be common in newborns, too much can cause a brain damage and Intellectual Disability. (Intellectual Disability)
  • Adequate prenatal care may reduce the risk of some rare causes of cerebral palsy. However, dramatic improvements over the last 15 years in obstetrical care at delivery has not reduced the incidence of cerebral palsy. In most cases, the injury causing the disorder may not be preventable.

  • Pregnant mothers with various medical conditions may need to be followed in a high risk prenatal clinic.

  • "An ounce of prevention is worth a pound of cure." Although one cannot always prevent injury, there are known ways to prevent injury to newborns. Parents and doctors must remain diligent during the birth process.
    • Avoid difficult or premature delivery of newborns.
    • Healthy pregnancy, healthy baby programs help avoid difficult or premature delivery and low birth weight, both risk factors for developmental disabilities.
    • Read our NHU Report on the Prevention of Disabilities - Spring 2015
      "America's health care system is in crisis precisely because we systematically neglect wellness and prevention." - U.S. Senator, Retired, Tom Harkin
      Read about the rising prevalence of developmental disabilities, the impact of developmental disabilities and the need for data for research. ----We all know to move forward on any problem facing mankind requires research.  We are stating, in order to protect children of the future, newborns, their parents and society from disabilities, we should broaden the scope of data collected through the U.S. Standard Certificate of Live Birth. This update to our existing data system would be more easily adopted and is necessary to more effectively meet current research needs for the purpose of preventing disabilities.   Existing data collected is vague and not in sync with the rapid advances in medicine for today.

Awareness

• People are more alike than they are different.

• Identify and develop an appreciation for each persons strengths and accomplishments.

• Become aware of the affect on daily activities.

• People First Language from disabilityisnatural.com by Kathie Snow offers insight into society's use of language when using the term disability. The term disability is a societal construct to identify characteristics related to a medical condition that may entitle an individual for services or legal protections. The use of this language encourages freedom, respect and inclusion for all, and recognizes forms of language that can isolate, create negative stereotypes and place attitudinal barriers for individuals. "Using People First Language, putting the person before the disability—and eliminating old, prejudicial, and hurtful descriptors, can move us in a new direction. People First Language is not political correctness; instead, it demonstrates good manners, respect, the Golden Rule, and more—it can change the way we see a person, and it can change the way a person sees themself!" For more articles by Kathie Snow to "help us begin to use more respectful and accurate language and create positive change," visit People First Language and More

Viewpoint

Misconceptions and derogatory terms that are no longer acceptable:

1. simple minded
2. mental retardation or deficiency
3. sub normality
4. developmental delay
5. slow learning
6. intellectual handicap or disadvantage


Intellectual Impairment is not the same as developmental disability or learning disability

On-Line Discussion

Visit our NHU Community Forum on Developmental/Intellectual Disabilities for more insight, awareness, viewpoints, experiences, needs and solutions.

Needs and Solutions

Care considerations
An aging population of developmentally disabled presents new challenges Elizabeth Skow, Correspondent, San Mateo County Times powered by Mercury News

This article is no longer available but it explored the idea and a personal experience of a man with intellectual disability that medical advances have increased the life spans of people with intellectual disabilities such as Down syndrome, and that means that there is a new population of seniors who will need specialized care. New evidence of a link between Alzheimer's and Down syndrome, combined with early aging, another characteristic of Down, means that even residents under 60 may need what may have been considered senior care.

Nutritional considerations

Montana Disability and Health Program: University of Montana Rural Institute: Nutrition Standards of Care
Nutrition for Individuals with Intellectual or Developmental Disabilities for Use by Personal Assistants, Service Providers, Healthcare Providers, Nutrition Professionals, and Family Members. The goal of this Nutrition Standards of Care is to promote quality food and nutrition supports for adults with intellectual and/or developmental disabilities (I/DD). These standards and practice guidelines are designed to help personal assistants, direct service staff and others to create and maintain environments that promote all three levels of healthy nutrition:
Level 1: Adequate Nutrition
Level 2: Individualized Nutrition
Level 3: Health-Promoting Nutrition


Best Practices in Education

• Use simple, short, uncomplicated sentences to ensure maximum understanding.
• Repeat instructions or directions frequently and ask the student if further clarification is necessary.
• Keep distractions and transitions to a minimum.
• Teach specific skills whenever necessary.
• Provide an encouraging, supportive learning environment that will capitalize on student success and self esteem.
• Use appropriate program interventions in all areas where necessary to maximize success.
• Use alternative instructional strategies and alternative assessment methods.
• Help the MID student develop appropriate social skills to support friend and peer relationships.
• Teach organizational skills.
• Use behavior contracts and reinforce positive behavior if necessary.
• Ensure that your routines and rules are consistent. Keep conversations as normal as possible to maximize inclusion with peers. Teach the difference between literal/figurative language.
• Mild Intellectual Disability, MID/ Mild Mental Retardation from Sue Watson, former About.com Guide (10/14/2010)

Treatment/Prognosis

• There is still no cure for Intellectual/Developmental Disability. There are however various treatment options that can modify the course, treat exacerbations, and manage symptoms.

• "People with developmental disabilities are at increased risk for heart disease, obesity, osteoporosis, seizures, mental illness and behavior disorders, hearing and vision problems and poor condition making and fitness." "The severity of the nutrition problem depends on ...age, level of functioning, severity of the disability, general state of health and to environmental, educational, training and social conditions. The altered physical growth rate or growth stunting often seen in persons with developmental disabilities may result from prenatal, perinatal, or postnatal causes." (ADA Report)

Learn More About Intellectual/Developmental Disabilities

Organizations and websites that provide information about Intellectual/Developmental Disabilities.

The Centers for Disease Control and Prevention provide information on Developmental Disabilities, which are a diverse group of severe chronic conditions that are due to mental and/or physical impairments. Developmental Disabilities include 5 specific diseases: Autism Spectrum Disorders, Cerebral Palsy, Hearing Loss, Intellectual Disability and Vision Impairment. The CDC offers information on monitoring the disability, research, prevention, and education materials. CDC monitoring provides reliable, population-based estimates of the number of school-aged children with developmental disabilities. Disability monitor information gathered through CDC can be used by policy makers to assess current public health programs, regulations and authorizations for individuals with developmental disabilities. The CDC lists research, offers information on prevention, education materials which include materials for teachers, lesson plans and monitoring, research and disability fact sheets.

National Dissemination Center for Children with Disabilities: Intellectual Disability page offers information on intellectual disability, causes, how it is diagnosed, what signs parents should look for, tips for parents, and tips for teachers.

National Library of Medicine's Genetics Home Reference Website. Information on each genetic condition; includes symptoms, how common it is, related genes, treatments, and links to resources where you can learn more about the condition. The Genetics Home Reference also can help you learn more about genetics, including genetic testing, genetic counseling, and gene therapy.

References

• ADA Report Position of the American Dietetic Association: Providing Nutrition Services for Infants, Children, and Adults with Developmental Disabilities and Special Health Care Need, (Link no longer available) May 3, 2003 HOD Leadership Team
  
• American Association of Intellectual and Developmental Disability (AAIDD) 03 Nov 08
  
• Developmental Disabilities Assistance and Bill of Rights Act of 1990 (PL 101-496) 2000 (PL 106-402)

• Developmental Disabilities: Topic Home Department of Health and Human Services Centers for Disease Control and Prevention (01/22/2011)

• Developmental Disabilities: Intellectual Disabilities, Department of Health and Human Services Center for Disease Control and Prevention, 2005, National Center on Birth Defects and Developmental Disabilities (link is no longer available)

• Intellectual Disabilities from the International Encyclopedia of Rehabilitation (IDER), Michael L. Wehmeyer and Shea Obremski, University of Kansas

• Primary Characteristics of Students with Intellectual Disabilities Education.com (10/14/2010)

• Pearson Allyn Bacon Prentice Hall Excerpt from Special Education for Today's Teachers: An Introduction, by M.S. Rosenberg, D.L. Westling, J. McLeskey, 2008 edition, p. 207-210. (link is no longer available)

• Goldenson, Robert, Disability and Rehabilitation Handbook, McGraw-Hill, New York, New York, 1978.
  p. 180

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