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The Arc: for People with Intellectual and Developmental Disabilities

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Submitted By gabbynicole92
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The Arc was founded in 1950 by a small group of concerned parents and community members in Minneapolis, MN. They had decided to come together and act as voices for those with intellectual disabilities. At that time there was very limited information known about intellectual disabilities, or mental retardation as they used to say, and the causes of it. Because of this, there were practically no programs or activities for these kids in order to help with the development, care, and support for families. At that time, it was extremely common for a physician to tell a parent their child would be better suited at an institution. This is when The Arc’s founders decided to fight because they wanted more for their children and wanted them to lead a fulfilling life. The Arc works passionately to ensure that every individual with a mental disability and their parents have access to information, advocacy, and skills they need in order to participate as an active citizen and member of their community.
This organization is committed to altering the perceptions of children with intellectual and developmental disabilities. In addition they also secure services for these individuals who have been denied an education, day care and preschool, and the right to work (The Arc, n.d.). This organization has adapted accordingly due to the sensitive terminology that has had an impact on these individuals. The term ‘mental retardation’ was used vastly as the appropriate terminology in the medical field. Although it may still be used today, the terms ‘intellectual disability’ and ‘developmental disability’ are starting to be adopted more broadly. The word ‘retarded’ has become a derogatory and demeaning word which is why the organization changed their name to The Arc (The Arc, n.d.). They strongly believe that the only ‘r-word’ that should be used when referring to individuals with intellectual and developmental disabilities is ‘Respect.’ The first name given to this organization was the National Association for Retarded Children (NARC) between the years of 1953 and 1973 (The Arc, n.d.). In 1973, that is when they decided to change their name to the National Association for Retarded Citizens. That only lasted until 1981 when they decided to change their name to the Association for Retarded Citizens of the United States (ARC). Finally in 1992, they had their last name change to The Arc of the United States (The Arc) which still holds today (The Arc, n.d.).

In the 1970’s The Arc helped fund Dr. Kenneth Jones’ research where he defined Fetal Alcohol Syndrome (FAS). In 1973, the term FAS was coined by two pediatric dysmorphologists Kenneth L. Jones and David W. Smith (Fairman Cooper, 1991). These two physicians rediscovered the telltale signs of alcohol exposure in infants which continued to show in early childhood. Unusual physical features and the failure to thrive in infants of alcoholic mothers were specifically noticed. It has been found that FAS outranks Down syndrome and spina bifida in prevalence and is also the leading known cause of mental retardation (Fairman Cooper, 1991). FAS is 100% preventable by not consuming alcohol while pregnant. Alcohol or ethanol is a well-identified fetal teratogen that may cause a variety of pathophysiological concerns to an unborn child (Burd, Blair, & Dropps, 2012). There are various adverse outcomes for the developing fetus as a result of the consumption of alcohol while pregnant. Such outcomes include spontaneous abortion, structural malformations, growth retardation both pre- and postnatally, neurodevelopmental abnormalities, and damage to the central nervous system (Ethen et. al., 2009). Individuals who have been prenatally exposed to alcohol have been described as having disabilities that fall under a broad umbrella that has been categorized as Fetal Alcohol Spectrum Disorder (FASD) (Ethen et. al., 2009) (Greenbaum et. al., 2009) (O’Connor, 2014). FASD is not a diagnosis itself, but a continuum of disorders that are from a direct result of maternal alcohol consumption. All disorders that fall under FASD criteria have similar symptomology where the most severe are characterized by distinct facial features and neurobehavioral and cognitive dysfunctions. FASD occurs as often as one to four per 1,000 live births annually in the United States alone (Greenbaum et. al., 2009). Furthermore it can be said that 1-5% of children are diagnosed with FASD (Hamilton et. al., 2014).

The Arc believes that all individuals who suffer from both intellectual and developmental disabilities should be defined by their own personal strengths, abilities, and values, not by their disability (The Arc, n.d.). These individuals are entitled to the respect, dignity, equality, safety, and security as any other member of society. Additionally, The Arc believes that individuals with disabilities are equal to other members of society before the law. This organization specifically advocates for individuals of varying intellectual/developmental disabilities to inspire them to achieve their full potential, protect their human rights, and support them and their families. The Arc represents the public interest by supporting and acting on behalf of the intellectually and developmentally disabled community as well as their families. This organization is extremely diverse and does not discriminate by the type of disability or membership these individuals have through the organization. The International FASD Awareness Day is celebrated every September 9th because it is the ninth day of the ninth month symbolizing the nine months of pregnancy (The Arc, 2014). The nine months of pregnancy is symbolized to prevent FASD by not drinking alcohol throughout the entire pregnancy. The Arc created the FASDs Prevention Project with a grant from the Health Resources and Services Administration which helps inform and educate healthcare professionals/providers about the risk of maternal alcohol consumption during pregnancy (The Arc, 2014). In 2005, the Surgeon General’s office updated their advisory on alcohol use during pregnancy. The advisory reads: “We do not know what, if any, amount of alcohol is safe. But we do know that the risk of a baby being born with any of the fetal alcohol spectrum disorders increases with the amount of alcohol a pregnant woman drinks, as does the likely severity of the condition. And when a pregnant woman drinks alcohol, so does her baby. Therefore, it is in the child’s best interest for a pregnant woman to simply not drink alcohol” (U.S. Surgeon General, 2005, p.1).

Birth defects are actually extremely common which may result in mental disabilities. The Arc encompasses more than 100 different diagnoses including autism, Down syndrome, Fragile X syndrome, FASD, and many more. I believe that not only women and their families should be aware of alcohol consumption during pregnancy, but their physicians as well because they should participate in the cause of prevention. Most importantly, all women of childbearing age or women who are considering getting pregnant should start taking folic acid and vitamin B12. Both of these supplements will help reduce the risk of neural tube defects which can affect the fetuses brain, spine, or spinal cord (Brent, 2011). Considering there is no cure for FASD or any other intellectual or developmental disability, the best thing to do is make sure the appropriate information is available both for informing and preventing the cause. With regards to FASD, it is one hundred percent preventable therefore prevention programs are the most ideal for tackling this issue head-on. For those individuals who have been diagnosed with some form of FASD, the best way to advocate for them would be to ensure they have the proper support, services, and quality of life.

References

Brent, RL. (2011 Oct 10) The Role of the Pediatrician in Preventing Congenital
Malformations. Pediatrics in Review, 32(10).
Burd, L., Blair, J., & Dropps, K. (2012). Prenatal alcohol exposure, blood alcohol concentrations and alcohol elimination rates for the mother, fetus and newborn.
Journal Of Perinatology, 32(9), 652-659. doi:10.1038/jp.2012.57
Ethen, M.K., Ramadhani, T.A., Scheuerle, A.E., Canfield, M.A., Wyszynski, D.F.,
Druschel, C.M., & Romitti, P.A. (2009). National Birth Defects Prevention
Study. Alcohol consumption by women before and during pregnancy. Maternal and Child Health Journal, 13(2), 274–285.
Fairman Cooper, E. (1991). Alcohol Use and Abuse by Women. CRS Report for
Congress: Congressional Research Service.
Greenbaum, R.L., Stevens, S.S., Nash, K., Koren, G., & Rovet, J. (2009). Social
Cognitive and Emotion Processing Abilities of Children With Fetal Alcohol
Spectrum Disorders: A Comparison With Attention Deficit Hyperactivity
Disorder. Alcoholism: Clinical and Experimental Research, 33 (10), 1656-1670.
Hamilton, D.A., Barto, D., Rodriguez, C.I., Magcalas, C.M., Fink, B.C., Rice, J.P., Bird,
C.W., Davies, S., & Savage, D.D. (2014). Effects of moderate prenatal alcohol exposure and age on social behavior, spatial response perseveration errors and motor behavior. Behavioral Brain Research, 269, 44–54.
O’Connor, M.J. (2014). Mental health outcomes associated with prenatal alcohol exposure: Genetic and environmental factors. Current Developmental Disorders
Reports, 1(3), 181–188.
The Arc. (2014, September 9). FASD Awareness Day. Retrieved from http://blog.thearc.org/2014/09/09/fasd-awareness-day/ The Arc. (n.d.). The Arc: For People with Intellectual and Developmental Disabilities.
Retrieved from http://www.thearc.org
U.S. Surgeon General. (2005). U.S. Surgeon General’s Advisory on Alcohol Use in
Pregnancy. Washington, D.C: U.S. Department of Health and Human Services
Press Office.…...

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