Developmental disabilities

Objectives

• Define the key terms and key abbreviations listed in this chapter.

• Identify the areas of function limited by a developmental disability.

• Explain how a developmental disability affects the person and family across the life span.

• Explain when developmental disabilities occur.

• Describe the causes of developmental disabilities.

• Explain how various developmental disabilities affect a person’s function.

• Explain how to promote quality of life.

Key terms

birth defect An abnormality present at birth that can involve a body structure or function

developmental disability (DD) A disability occurring before 22 years of age

disability Any lost, absent, or impaired physical or mental function

inherited That which is passed down from parents to children

intellectual disability Involves severe limits in intellectual function and adaptive behavior occurring before age 18

spastic Uncontrolled contractions of skeletal muscles

KEY ABBREVIATIONS

ADA	Americans With Disabilities Act of 1990
CP	Cerebral palsy
DD	Developmental disability
DS	Down syndrome
FXS	Fragile X syndrome
IQ	Intelligence quotient
OBRA	Omnibus Budget Reconciliation Act of 1987
SB	Spina bifida

Many diseases, illnesses, and injuries cause disabilities in adulthood. A disability is any lost, absent, or impaired physical or mental function. A disability occurring before 22 years of age is a developmental disability (DD). DD causes occur before, during, or after birth. Or they are caused by childhood illnesses and injuries.

Some infants have birth defects. A birth defect is an abnormality present at birth that can involve a body structure or function. It can be inherited (p. 677), occur during pregnancy, or occur during birth. The defect causes disabilities or death. Causes of birth defects include:

• Genetic problems

• Problems with the number or structure of chromosomes

• Problems during pregnancy:

• Rubella (German measles)

• Untreated or uncontrolled diabetes

• Contact with dangerous chemicals

• Using drugs or alcohol

• Smoking

A developmental disability can be a physical or mental impairment or both. It is severe, chronic, and life-long. Function is limited in 3 or more life skills:

• Self-care

• Understanding and expressing language

• Learning

• Mobility

• Self-direction

• Capacity for independent living

• Economic self-sufficiency (supporting oneself financially)

Developmentally disabled children become adults. Not children forever, they need life-long help, support, and special services in these areas:

• Housing

• Employment

• Education

• Civil and human rights protection

• Health care

A developmental disability affects the family throughout life. The infant or child becomes a teenager, young adult, middle-age adult, and older adult. Both the child and parents grow older. Often it is hard to care for an older child or adult. It may be hard to handle or move the person. A parent may become ill, injured, or disabled or may die. Still, the disabled person needs care. Older parents may not have the energy or means to care for the aging child. Long-term care may be required.

Changes from aging occur (Chapter 10). The onset of aging may occur earlier when DD are severe.

Some severely disabled children need long-term care in centers for the developmentally disabled. Some adults with DD need nursing center care. They are further protected by the Omnibus Budget Reconciliation Act of 1987 (OBRA). OBRA requires that centers provide age-appropriate activities. Staff must have special training to meet their care needs.

Intellectual disabilities

An intellectual disability involves severe limits in intellectual function and adaptive behavior. It occurs before age 18. Intellectual function relates to learning, thinking, reasoning, and solving problems Adapt means to change or adjust. The person has low intellectual function. Adaptive behavior is impaired.

See Focus on Communication: Intellectual Disabilities.

FOCUS ON COMMUNICATION

Intellectual Disabilities

Mental retardation is a common term for intellectual disabilities. However, the term is offensive and outdated. “Intellectual disabilities” is the newer term preferred by the Arc of the United States. The Arc is a national organization focused on people with intellectual and related developmental disabilities.

In June 2003, the President’s Committee on Mental Retardation was changed to the “President’s Committee for People with Intellectual Disabilities.” The name was changed to:

• Update and improve the image of people with mental retardation

• Help reduce discrimination against such persons

• Reduce confusion between “mental illness” and “mental retardation”

Avoid using “mental retardation” and “mentally retarded.” Instead use the terms “intellectual disabilities” or “intellectually disabled.”

The Arc describes an intellectual disability as:

• An IQ score of about 70 or below. (IQ means intelligence quotient.) The person learns at a slower rate than normal. Learning ability is less than normal.

• A significant limit in at least one adaptive behavior. Adaptive behaviors are skills needed to function in everyday life—to live, work, and play. They involve communication, reading and writing, and money concepts.

• Social skills involve interpersonal skills, responsibility, not being tricked by others, following rules, and obeying laws.

• Practical skills involve personal activities of daily living: eating, dressing, mobility, and elimination.

• Other personal skills include preparing meals, taking medications, using the phone, managing money, using transportation, housekeeping, job skills, and maintaining a safe setting.

Brain development is impaired. It can occur before birth, during birth, or before age 18. Causes are listed in Box 45-1. According to the Arc, alcohol is the leading preventable cause of intellectual disabilities.

Box 45-1

Causes of Intellectual Disabilities

Genetic conditions

• Abnormal genes from parents

• Errors when genes combine

• Gene disorders during pregnancy caused by infections, over-exposure to x-rays, and other factors

• Down syndrome (p. 676)

• Fragile X syndrome (p. 677)

Problems during pregnancy

• Alcohol use (fetal alcohol syndrome)

• Drug use

• Smoking

• Malnutrition (mal means bad)

• Rubella (German measles)

• Diabetes

• Lack of oxygen to the brain

Problems at birth

• Lack of oxygen to the brain

Problems after birth

• Childhood diseases (whooping cough, chicken pox, measles, Hib disease, meningitis, encephalitis)

• Head injuries

• Near drowning

• Lead poisoning

• Poisoning (alcohol, ammonia, bleaches, detergent, household cleaners and polishes, gasoline, kerosene, lighter fluid, drugs, lye, paint thinners and removers, pesticides, turpentine, weed killers, mercury, and so on)

• Shaken baby syndrome

• Malnutrition

• Dehydration

• Reye’s syndrome (a disease caused by medications that contain aspirin)

• Poor health care

Modified from Causes and prevention of intellectual disabilities, The Arc of the United States, revised August 2009, Silver Spring, Md.

Intellectual disabilities range from mild to severe. Persons mildly affected are slow to learn in school. As adults, they can function in society with some support. For example, they need help finding a job. Support is not needed every day. Some people need much support every day at home and at work. Still others need constant support in all areas.

The Arc believes that persons with intellectual disabilities must be able to enjoy and maintain a good quality of life. A good quality of life involves friendships, health and safety, and the right to make choices and take risks.

The Arc believes that children should live in a family. They should learn and play with children without disabilities. As adults, they should control their lives to the greatest extent possible. They should speak, make choices, and act for themselves. They should live in a home and have friends. They should do meaningful work and enjoy adult activities.

Sexuality

Persons with intellectual and developmental disabilities have physical, emotional, and social needs and desires. Reproductive organs develop. Some have life partners. Others marry and have children. Some persons can control their sexual urges. Others cannot. The type and location of sexual responses may be inappropriate. Also, sometimes persons with intellectual disabilities are sexually abused.