At the beginning of the 20th century, there were close to 100,000 children in institutions – many of those were children with Down syndrome with a dismal existence and a life expectancy of 9 years. The gains made in the last third of the century in education, employment, and community living can, and must be, further broadened. The new century offers the possibility of unparalleled opportunities for individuals with Down syndrome. Life expectancy for a baby born today with Down syndrome is 55-60 years.
This is the first generation of individuals with Down syndrome to age. Many health care professionals are just beginning to understand what is “normal” aging and what may be certain conditions specific to Down syndrome. For example, there has been a tendency to over-diagnose Alzheimer’s disease in those with Down syndrome because there is a close connection. Yet only 20 to 25% of all adults with Down syndrome show any of the dementia or cognitive decline that is the hallmark of Alzheimer’s disease.
Research in Down syndrome is funded at an extremely low level compared to other disabilities. We must continue to increase funding since the key to also unlocking the problems associated with Down syndrome lies on the 21st chromosome. For example, current researchers say that raising the IQ points of an individual with Down syndrome by 20 points is not out of the question.
People with Down syndrome want to be accepted. They want to be included. They wish to be provided with choices and opportunities. People with Down syndrome have goals and dreams. They want to be heard and given the same respect as everyone else. Individuals with Down syndrome are thinking and feeling people, and they want to be treated as such. They want the same quality of life as everyone else.
