Down Syndrome : Early Intervention, Adolescence and Adults

by National Institute of Health

(Page 4 of 4)

Early Intervention and Education

The term "early intervention" refers to an array of specialized programs and related resources that are made available by health care professionals to the child with Down syndrome. These health care professionals may include special educators, speech therapists, occupational therapists, and social workers. It is recommended that stimulation and encouragement be provided to children with Down syndrome.

The evaluation of early intervention programs for children with Down syndrome is difficult, due to the wide variety of experimental designs used in interventions, the limited existing measures available that chart the progress of disabled infants, and the tremendous variability in the developmental progress among children with Down syndrome, a consequence in part of the many complicating medical factors. While many studies have been conducted to assess the effects of early intervention, the information is limited and contradictory regarding the long-term success of early intervention for children with Down syndrome.

However, federal laws (Public Law 94-142) are in place to ensure each state has as a goal that "all handicapped children have available to them a free public education and related services designed to meet their unique needs." The decision of what type of school a child with Down syndrome should attend is an important one, made by the parents in consultation with health and education professionals. A parent must decide between enrolling the child in a school where most of the children do not have disabilities (inclusion) or sending the child to a school for children with special needs. Inclusion has become more common over the past decade.

Adolescence

Like all teenagers, individuals with Down syndrome undergo hormonal changes during adolescence. Therefore, teenagers with Down syndrome should be educated about their sexual drives. Scientists have medical evidence that males with Down syndrome generally have a reduced sperm count and rarely father children. Females with Down syndrome have regular menstrual periods and are capable of becoming pregnant and carrying a baby to term.

Adults with Down Syndrome

The life expectancy for people with Down syndrome has increased substantially. In 1929, the average life span of a person with Down syndrome was nine years. Today, it is common for a person with Down syndrome to live to age fifty and beyond. In addition to living longer, people with Down syndrome are now living fuller, richer lives than ever before as family members and contributors to their community. Many people with Down syndrome form meaningful relationships and eventually marry. Now that people with Down syndrome are living longer, the needs of adults with Down syndrome are receiving greater attention. With assistance from family and caretakers, many adults with Down syndrome have developed the skills required to hold jobs and to live semi-independently.

Premature aging is a characteristic of adults with Down syndrome. In addition, dementia, or memory loss and impaired judgment similar to that occurring in Alzheimer disease patients, may appear in adults with Down syndrome. This condition often occurs when the person is younger than forty years old. Family members and caretakers of an adult with Down syndrome must be prepared to intervene if the individual begins to lose the skills required for independent living.

Down Syndrome in the Workplace

The Americans with Disabilities Act (ADA) makes it illegal for an employer of more than 15 individuals to discriminate against qualified individuals in application procedures, hiring, advancement, discharge, compensation, job training, and other terms of employment. The ADA requires that an employer provide reasonable accommodation for individuals who are qualified for a position. More information about the ADA can be obtained from the Office of Civil Rights of the U.S. Department of Health and Human Services, Washington, DC, 20201.

Future Directions in Down Syndrome Research

Recently, it has been suggested that children with Down syndrome might benefit from medical intervention that includes amino acid supplements and a drug known as Piracetam. Piracetam is a psychoactive drug that some believe may improve cognitive function. However, there have been no controlled clinical studies conducted to date using Piracetam to treat Down syndrome in the U.S. or elsewhere that show its safety and efficacy.

Down syndrome researchers have developed a mouse model to analyze the developmental consequences of Down syndrome. Mice are used because a large stretch of mouse chromosome 16 has many genes in common with those on human chromosome 21. Studying these models at varying stages of development will enhance our basic understanding of Down syndrome and facilitate the development of effective interventions and treatment strategies.

About the Author

NIH is the nation's medical research agency - making important medical discoveries that improve health and save lives. The National Institutes of Health (NIH), a part of the U.S. Department of Health and Human Services, is the primary Federal agency for conducting and supporting medical research.