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Excerpt from the National Down Syndrome Society:
- People with Down syndrome should always be referred to as people first.
- Instead of "a Down syndrome child," it should be "a child with Down syndrome." Also avoid "Down's child" and describing the condition as "Down's," as in, "He has Down's.”
- Down syndrome is a condition or a syndrome, not a disease.
- People "have" Down syndrome, they do not "suffer from" it and are not "afflicted by" it.
- “Typically developing” or “typical” is preferred over “normal.”
- “Intellectual disability" or "cognitive disability” has replaced “mental retardation” as the appropriate term.
- We strongly condemn the use of the word "retarded" in any derogatory context. Using this word is hurtful and suggests that people with disabilities are not competent.
- We use the preferred spelling, Down syndrome, rather than Down's syndrome.
- Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it. An "apostrophe s" connotes ownership or possession.
- While Down syndrome is listed in many dictionaries with both popular spellings (with or without an apostrophe s), the preferred usage in the United States is Down syndrome. The AP Stylebook recommends using "Down syndrome," as well.
Our Mission and Vision
The mission of the Down Syndrome Association of Central Kentucky (DSACK) is to celebrate our Down syndrome community, support individuals with Down syndrome and their families, and educate ourselves and others about the true joys and challenges of Down syndrome.
Our vision is that Central Kentucky will be a community where people with Down syndrome are valued and included throughout their lives.
Our Medical Outreach Coordinator welcomes the opportunity to discuss how DSACK can best serve our local medical professionals and our DSACK families whose lives uniquely intersect because of an extra 21st chromosome. Please contact Courtney or 859-494-7809.
Through DSACK’s medical outreach efforts, we strive to provide medical professionals and families with accurate, up-to-date, and balanced information that has been created through collaboration and input from both the medical and advocacy communities. We work hard to establish collaborative relationships with medical professionals who may deliver a prenatal or postnatal Down syndrome diagnosis and/or who may provide care for our families.
DSACK often connects medical professionals and new families to local and national resources and support. Our new and expectant parent packets are FREE to parents and contain gold-standard materials that have been endorsed by both national disability organizations and professional medical groups, including the National Society of Genetic Counselors, American College of Obstetricians and Gynecologists, American College of Medical Genetics and Genomics, and American Academy of Pediatrics.
Some of the presentations our Medical Outreach Coordinator has given include:
UK Center for Interprofessional Health Education GRAND ROUNDS
Baptist Health Lexington’s Women’s Health Pediatric and Perinatal Care Conference
Kentucky Children’s Hospital Health Education Center
Women's Hospital at Saint Joseph East/CHI Saint Joseph Health
UK Communication Sciences and Disorders Clinical Practicum
UK College of Social Work
Marshall Pediatric Therapy
Cardinal Hill Rehabilitation Hospital Pediatric and Adult Outpatient Therapy
Baptist Health Mother/Baby Staff
EKU Occupational Therapy Program
The National Center provides this clearinghouse of professionally recommended resources so that medical practitioners, expectant parents, and new parents have access to accurate, up-to-date, and balanced information about Down syndrome. https://www.lettercase.org/
This fact sheet summarizes recently published and updated estimates of the numbers of babies born and people living with Down syndrome in the USA file:///C:/Users/Courtney/Dropbox%20(DSACK)/3%20-%20MC%20Courtney/Outreach,%20Medical/Medical%20Outreach%20Resources/down-syndrome-population-usa-factsheet-201901.pdf
Kentucky Department for Public Health Division of Maternal & Child Health Down Syndrome Data Brief Sept 2016 https://chfs.ky.gov/agencies/dph/dmch/ecdb/Documents/DownSyndromeDataBriefSept2016.pdf
Kentucky is 1 of 19 states that has passed a Down Syndrome Information Act into Law. DSACK is mentioned specifically in our state law as a valid local support program KRS 211.192 requires health care providers to provide the expectant or new parent with “Up-to-date, evidence-based, written information about Down syndrome”
The Kentucky Cabinet for Health and Family Services also lists DSACK as a valid resource for Parent Support Information. There are additional resources for health care providers to share:
Global Down Syndrome Foundation is a public nonprofit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education, and advocacy. Formally established in 2009, Global’s primary focus is to support the Linda Crnic Institute for Down Syndrome, the first academic home in the United States committed solely to research and medical care for people with Down syndrome. Because Down syndrome is the least-funded genetic condition in the United States, fundraising and government advocacy to correct the alarming disparity of national funding for people with Down syndrome is a major goal.
The LuMind IDSC Foundation envisions a world where every person with Down syndrome thrives with improved health, independence, and opportunities to reach his or her fullest potential. LuMind IDSC will accelerate research to increase availability of therapeutic, diagnostic, and medical care options and will empower families through education, connections, and support.
American College of Medical Genetics and Genomics statement on noninvasive prenatal screening for fetal aneuploidy Anthony R. Gregg, M.D., S.J. Gross, M.D., R.G. Best, Ph.D, K.G. Monaghan, Ph.D, K. Bajaj, M.D., B.G. Skotko, M.D., B.H. Thompson, M.D. and M.S. Watson, Ph.D; are The Noninvasive Prenatal Screening Work Group of the American College of Medical Genetics and Genomics https://www.acmg.net/docs/ACMG_Policy_Statememt_NIPS_May2013_GIM.pdf
University of Kentucky, Interdisciplinary Human Development Institute (Brighter Tomorrows) Resources for families and physicians. including videos and information on screening, diagnostic tests. and evidence-based practices when delivering a diagnosis of Down syndrome.
“Prenatal Diagnosis of Down Syndrome: How Best to Deliver the News,” seeks to provide evidence-based recommendations to physicians on how to best deliver a prenatal diagnosis of Down syndrome to expectant parents. Results showed that a health care professional knowledgeable about Down syndrome with specific training in the delivery of sensitive diagnoses should be part of the first conversation. A prenatal diagnosis of Down syndrome should be presented in person or at a pre-established time by phone. Physicians should provide accurate information about medical conditions associated with Down syndrome and connect parents to local Down syndrome support groups and other resources. We conclude that physicians can deliver prenatal diagnoses of Down syndrome in a sensitive manner that can be appreciated by expectant parents.
“Postnatal Diagnosis of Down Syndrome: Synthesis of the Evidence on How Best to Deliver the News” Parents prefer to receive the diagnosis together in a joint meeting with their obstetrician and pediatrician. The conversation should take place in a private setting as soon as a physician suspects a diagnosis of Down syndrome. Accurate and up-to-date information should be conveyed, including information about local support groups and resources. By implementing a few cost-neutral measures, physicians can deliver a postnatal diagnosis of Down syndrome in a manner that will be deemed by new parents as sensitive and appropriate.
Practice Guidelines for Communicating a Prenatal or Postnatal Diagnosis of Down Syndrome: Recommendations of the National Society of Genetic Counselors
Down syndrome is one of the most common conditions a genetic counselor is likely to encounter in the genetics clinic. Given the improved outlook for individuals with Down syndrome, it is crucial that genetic counselors and other health care providers are aware of the key elements in communicating this diagnosis to ensure that families receive up-to-date and balanced information, delivered in a supportive and respectful manner. This guideline serves to 1) summarize the various etiologies of Down syndrome and the associated recurrence risks; 2) review the key components of disclosing a diagnosis of Down syndrome in both the prenatal and the postnatal settings; and 3) provide references for both professional and patient resources.
National Institutes of Health
Comprehensive resource regarding Down syndrome, screening, development and genetics and links to additional information including fact sheets in English and Spanish. https://ghr.nlm.nih.gov/condition/down-syndrome
National Council on Disability’s 2019 Report entitled: “Genetic Testing and the Rush to Perfection: Part of the Bioethics and Disability Series” https://ncd.gov/sites/default/files/NCD_Genetic_Testing_Report_508.pdf
IDD Toolkit A healthcare toolkit, supported in part by the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities (Grant #90DD0595, Administration on Developmental Disabilities, ACF, HHS) http://iddtoolkit.vkcsites.org/
The Vanderbilt Kennedy Center mission is to facilitate discoveries and best practices to improve the lives of persons with developmental disabilities and their families. https://vkc.mc.vanderbilt.edu/vkc/
© 2021 Down Syndrome association of central kentucky