Country Research United States - Google Docs

I.

Definition of Down Syndrome A. Down syndrome is a genetic disorder where an individual has a full or partial extra copy of chromosome 21.

II.

Contemporary Issues Regarding Down Syndrome A. Conditions and disorders commonly related with Down syndrome 1. Heart defects a) Almost 50 percent of babies born with Down syndrome have congenital heart disease (CDC), the most common birth defect. b) This can lead to high lung blood pressure, the inability of the heart to pump blood efficiently and effectively, and cyanosis (blue colored skin caused by reduced amounts of oxygen in the blood). 2. Vision problems a) Over 50 percent of children with Down syndrome have vision issues. (1) This includes cataracts (clouding in eye lens), nearsightedness, “crossed eyes”, and involuntary eye twitching. 3. Hearing loss a) 75 percent of children with Down syndrome have suffered some hearing loss.

(1) This can be related to structural problems with the ear. These children are also prone to ear infection, which can lead to hearing loss. B. Causes of Down syndrome 1. All those with Down syndrome have an extra portion of chromosome 21, but the cause is unknown. C. Factors related to Down syndrome 1. The younger a woman has a child, the lower the chance for Down syndrome. a) At 35, she has a 0.3 percent chance, at 40 a one percent chance, and at 45 approximately a 3.5 percent chance. 2. One third of translocation cases are hereditary, which is about one percent of all Down syndrome cases. a) Recurring translocation occurs about three percent of the time if the father is the carrier, and 10 to 15 percent if the mother is the carrier. III.

Organizations Addressing Down Syndrome A. Club 21 1. Club 21 is a family focused organization whose goal is to provide resources and tools to fully include persons with Down syndrome. 2. It educates both children with Down syndrome and their parents through tutoring, speakers and classes.

B. National Down Syndrome Congress 1. The NDSC provides informational resources regarding Down syndrome, hosts webinars and assembles the largest annual convention for those with Down syndrome in the world. C. National Down Syndrome Society 1. The NDSS is the leading human rights organization for individuals with Down syndrome. 2. It advocates for equal rights and hosts walks and runs to raise awareness and funds for Down syndrome. IV.

Steps Taken to Address Down Syndrome A. Achieving a Better Life Experience (ABLE) Act 1. In December 2014 the ABLE Act became law allowing those with disabilities to start tax-free savings accounts that do not affect eligibility for important government supports. B. Ethan Saylor Alliance 1. In May 2015 the alliance was established in Maryland to increase training for members of law enforcement regarding any needs of those with intellectual or developmental disabilities. C. Nondiscrimination in Organ Transplantation Laws 1. In 1996 a law was passed in California prohibiting discrimination against people with disabilities with regard to organ transplantations.