Developmental Disabilities Chapter 47 Developmental Disabilities Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

Developmental Disabilities A disability occurring before 22 years of age is a developmental disability (DD). DD causes occur before, during, or after birth. Childhood illness and injuries can cause DD. Some infants have birth defects. Causes include: Genetic problems Chromosome problems Problems during pregnancy A birth defect is an abnormality present at birth that involves a body structure or function. It can be inherited, occur during pregnancy, or occur during birth. The defect causes disabilities or death. Problems during pregnancy include rubella (German measles), untreated or uncontrolled diabetes, contact with dangerous chemicals, using drugs or alcohol, or smoking. Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

Developmental Disabilities (cont’d) A DD can be a physical or mental impairment or both. It is severe, chronic, and life-long. Function is limited in three or more life skills. Self-care Understanding and expressing language Learning Mobility Self-direction Capacity for independent living Supporting oneself financially Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

Developmental Disabilities (cont’d) Developmentally disabled children need life-long help, support, and special services for: Housing Employment Education Protection of civil and human rights Health care Independence to the extent possible is the goal for these persons. Developmentally disabled children become adults. There are many resources to assist the person and family. Refer to p. 758 in the Textbook. Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

Developmental Disabilities (cont’d) A DD affects the family throughout life. Both the child and parents grow older. Older parents may not have the energy or means to care for the aging child. Persons with developmental disabilities have the same rights as every citizen. Their rights are also protected by: The Americans With Disabilities Act of 1990 (ADA) The Developmental Disabilities Assistance and Bill of Rights Act of 2000 Often, it is hard to care for an older child or adult with a DD. It may be hard to handle or move the person. A parent may become ill, injured, or disabled, or may die. The disabled person still needs care. Aging may occur earlier when developmental disabilities are severe. Persons with DDs have the right to live, learn, work, and enjoy life. Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

Developmental Disabilities (cont’d) Some severely disabled children live in centers for the developmentally disabled. Some adults with DDs 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. Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

Intellectual Disabilities Intellectual disability involves severe limits in intellectual function and adaptive behavior. It occurs before age 18. The person has low intellectual function. Adaptive behavior is impaired. The Arc of the United States describes an intellectual disability as: An IQ (Intelligence Quotient) score of about 70 or below 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. Intellectual function relates to learning, thinking, reasoning, and solving problems. Adapt means to change or adjust. Review the Focus on Communication: Intellectual Disabilities Box on p. 758 in the Textbook. The Arc of the United States is a national organization focused on people with intellectual and related developmental disabilities.

Intellectual Disabilities (cont’d) Brain development is impaired. It can occur before birth, during birth, or before the age of 18. According to the Arc, alcohol is the leading preventable cause of intellectual disabilities. Intellectual disabilities can be mild to severe. 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. Review the contents of Box 47-1 on p. 759 in the Textbook. Persons mildly affected are slow to learn in school. As adults, they can function in society with some support. Support is not needed every day. Others need much support every day at home and at work. Still others need constant support in all areas. Some persons with intellectual and development disabilities can control sexual urges. Others cannot. The type and site of sexual responses may be inappropriate. Sometimes, they are sexually abused. Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

Intellectual Disabilities (cont’d) The Arc’s beliefs about sexuality include the right to: Develop friendships and emotional and sexual relationships Dignity and respect Privacy and confidentiality Freely choose associations Sexual expression Learn about sex, marriage and family, abstinence, safe sex, sexual orientation, sexual and emotional abuse Be protected from sexual harassment and abuse Decide about having and raising children Make birth control decisions Have control over their own bodies Protection from sterilization because of the disability The person has the right to love and be loved, and to end a relationship as he or she chooses. Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

Down Syndrome Down syndrome (DS) is a common genetic cause of mild to moderate intellectual disabilities. At fertilization, a male sex cell unites with a female sex cell. Each has 23 chromosomes. When they unite, the cell has 46 chromosomes. In DS, an extra 21st chromosome is present. The fertilized cell has 47 chromosomes. The DS child has certain features caused by the extra chromosome. Many children with DS have other health problems. Dementia may appear in adults with DS. The extra chromosome causes these DS features: small head; eyes that slat upward; flat face; short, wide neck; large tongue; wide, flat nose; abnormally shaped ears; short stature; short, wide hands with stubby fingers and poor muscle tone. Refer to Figure 47-1 on p. 760 in the Textbook. Leukemia is a risk. Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

Down Syndrome (cont’d) Persons with DS need: Speech, language, physical, and occupational therapies Health and sex education A healthy diet Regular exercise Most persons with DS learn self-care skills. Weight gain and constipation are problems. Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

Fragile X Syndrome Fragile X syndrome (FXS) is the most common form of inherited intellectual disabilities. There is a change in the gene that makes a protein needed for brain development. In FXS, the body makes little or none of the protein. FXS has no cure. Help is needed to reduce or eliminate problems with these common signs and symptoms. Learning Physical Social and emotional Speech and language Sensory Fragile X syndrome is inherited (passed down from parents to children). Girls often have milder symptoms than boys. Learning disabilities range from mild to severe. Teenagers and adults may have long ears, faces, and jaws. Joints may be loose and flexible. Behavior problems are common. Severe speech and language problems are not common in girls. Most boys may have problems speaking clearly, stuttering, leaving out parts of words, or understanding “clues” when talking to people (voice tone, body language). Bright lights, loud noises, and how something feels may bother children. They may have trouble making eye contact.

Cerebral Palsy Cerebral palsy (CP) is a group of disorders involving muscle weakness or poor muscle control. The defect is in the motor region of the brain. Abnormal movements, posture, and coordination result. The defect is from brain damage before, during, or within a few years after birth. Causes include: Lack of oxygen to the brain The brain not developing properly There is no cure. Problems walking are likely. Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

Cerebral Palsy (cont’d) Infants at risk include those who: Are premature Have low birth weight Do not cry within the first 5 minutes after birth Need mechanical ventilation Have bleeding in the brain Have heart, kidney, or spinal cord defects Have blood problems Have seizures Have fetal alcohol syndrome Brain damage in infancy and early childhood also can result in CP. Lack of oxygen to the brain can occur from: poisoning; traumatic brain injuries from accidents, falls, or child abuse (including shaken baby syndrome); encephalitis and meningitis or rubella (German measles).

Cerebral Palsy (cont’d) Body movements and body parts are affected. The following types are the most common: Spastic cerebral palsy Athetoid cerebral palsy The following terms describe the body parts involved: Hemiplegia—The arm and leg on one side are paralyzed. Diplegia—Similar body parts are affected on both sides of the body. Both arms or both legs are paralyzed. Quadriplegia—Both arms, both legs, and the trunk and neck muscles are paralyzed. With spastic cerebral palsy, muscles contract or shorten. They are stiff and cannot relax. One or both sides of the body may be involved. Posture, balance, and movement are affected. With athetoid cerebral palsy, the person cannot control movements. The person has constant, slow, weaving, or writhing motions. Sometimes, the tongue, face, and neck muscles are involved. Drooling and grimacing result. Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

Cerebral Palsy (cont’d) The person with CP can have many other impairments. Care needs depend on the degree of brain damage. Disabilities range from mild to severe. The goal is independence to the extent possible. Physical, occupational, and speech therapies can help. Some persons use braces, walkers, crutches, or wheelchairs. Some need vision and hearing aids. Drugs can control seizures. Surgery and drugs can help some muscle problems. Other impairments include: intellectual and learning disabilities; hearing, vision, and speech impairments; drooling; bladder and bowel control problems; seizures; difficulty swallowing; attention-deficit/hyperactivity disorder; breathing problems from poor posture or pressure ulcers from immobility. Some persons are very smart. Others have severe intellectual disabilities. Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

Autism Autism is a brain disorder with no cure. The child has: Problems with social skills Verbal and nonverbal communication problems Repetitive behaviors and routines Narrow interests Autism is more common in boys than in girls. The cause is unknown. Genetics and environmental factors may be involved. Autism begins in early childhood. Signs of delayed development are seen at about 18 months of age. Signs of autism are listed in Box 47-2 on p. 761 in the Textbook. Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

Autism (cont’d) With therapy, the person can learn to change or control behaviors. Therapies include behavior modification, physical and occupational therapy, speech and language therapy, drug therapy, music therapy, diet therapy, auditory therapy, communication therapy, sensory therapies, and recreation therapy. Social and work skills are needed. Other disorders are common with autism. They include fragile X syndrome and seizures. The disorder ranges from mild to severe. Children with autism become adults. Some adults work and live independently. Others need support from family and community services. Some live in group homes or residential facilities.

Spina Bifida Spina bifida (SB) is a defect of the spinal column. The defect occurs during the first month of pregnancy. Hydrocephalus often occurs with SB. In SB, vertebrae do not form properly. This leaves a split in the vertebrae with the spinal cord unprotected. SB can occur anywhere in the spine. The lower back is a common site. Spinal column bones (vertebrae) protect the spinal cord. In SB, only a membrane covers the spinal cord, which contains nerves. If the spinal cord is not protected, nerve damage occurs. Affected body parts do not function properly. Paralysis may occur. Bowel and bladder problems are common. Infection is a threat.

Spina Bifida (cont’d) Types of spina bifida include: Spina bifida occulta Vertebrae are closed. The spinal cord and nerves are normal. The person has a dimple or tuft of hair on the back. Often, there are no symptoms. Foot weakness and bowel and bladder problems can occur. Spina bifida cystica Part of the spinal column is in a pouch or sac. A membrane or a thin layer of skin covers the sac. The pouch is easily injured. Infection is a risk. Myelomeningocele (or meningomyelocele) With spina bifida occulta, a defect occurs in the vertebrae closure. The defect is hidden.

Spina Bifida (cont’d) There are two types of spina bifida cystica. Meningocele The sac does not contain nerve tissue. The spinal cord and nerves are usually normal. Nerve damage usually does not occur. Surgery corrects the defect. Myelomeningocele (meningomyelocele) The pouch contains nerves, spinal cord, meninges, and cerebrospinal fluid. Nerve damage occurs. Loss of function occurs below the level of damage. The defect is closed with surgery. Refer to Figure 47-3 on p. 762 in the Textbook. Refer to Figure 47-4 on p. 762 in the Textbook. Some children have learning problems. They may have problems with attention, language, reading, and math. They are at high risk for gastro-intestinal disorders and mobility problems. Skin breakdown, depression, and social and sexual issues are other risks. Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

Hydrocephalus With hydrocephalus, cerebrospinal fluid collects in and around the brain. The head enlarges. Pressure inside the head increases. Intellectual disabilities and neurological damage occur without treatment. Vision problems, seizures, and learning disabilities can occur. A shunt is placed in the brain. It allows cerebrospinal fluid to drain from the brain. The shunt must remain open (patent). The shunt is a long flexible tube that goes from the brain into a body cavity to drain. Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.