National Down Syndrome Society

Last updated
National Down Syndrome Society
AbbreviationNDSS
Formation1979
PurposeDisability Advocate
HeadquartersManhattan, New York City, New York, US
Official language
English, Spanish
President & CEO
Kandi Pickard
Affiliations375
Budget
$2,000,000+
Website www.ndss.org

The National Down Syndrome Society (NDSS) is an American organization that offers support to people with Down syndrome, their families, friends, teachers, and coworkers, and educates the general public about Down syndrome. The mission of the NDSS is to be the leading human rights organization for all individuals with Down syndrome. [1]

Contents

History

The NDSS was founded by Betsy Goodwin and Arden Moulton. Goodwin's daughter, Carson was born in 1978 with Down Syndrome. [2] [3] The parents soon discovered that the support and resources available to parents with Down syndrome children were very limited. Goodwin and Arden created the NDSS, which gained official nonprofit status in 1979. [4] The National Down Syndrome Society envisions "a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations and become valued members of welcoming communities." [5]

Areas of programming

NDSS focuses on four items of programming to enhance the quality of life for those with Down syndrome. [6]

Other Initiatives

Public Webinar

In January 2019, the NDSS offered a free public webinar on facilitated communication held by Christine Ashby. [11] This communication method is based on the theory that many people that are unable to speak and are not cognitively impaired, but are simply unable to produce the sounds for speech. A helper or "facilitator" assists by guiding the non-speaking person's hand over a keyboard. Many masked independent tests and studies have suggested that the facilitator is actually the one doing the typing, and not the person with the disability. Stuart Vyse, reporting for Skeptical Inquirer, commented that "Given NDSS's mission of being 'The leading human rights organization for all individuals with Down syndrome,' it is not surprising the organization supports a communication method that [Christy] Ashby [PhD] described as a 'human right and a civil right.' Nonetheless, it is unfortunate that a leading Down syndrome advocacy group is promoting a belief system over evidence-based methods that work." [11]

Related Research Articles

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The rapid prompting method (RPM) is a pseudoscientific technique that attempts to aid communication by people with autism or other disabilities to communicate through pointing, typing, or writing. Also known as Spelling to Communicate, it is closely related to the scientifically discredited technique facilitated communication (FC). Practitioners of RPM have failed to assess the issue of message agency using simple and direct scientific methodologies, saying that doing so would be stigmatizing and that allowing scientific criticisms of the technique robs people with autism of their right to communicate. The American Speech-Language-Hearing Association has issued a statement opposing the practice of RPM.

<span class="mw-page-title-main">Stuart Vyse</span> American psychologist specializing in superstition and irrational behavior (born 1950)

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References

  1. "Mission & Vision". National Down Syndrome Society. Archived from the original on 2 February 2018. Retrieved 2017-01-11.
  2. Sara, Sally (2008-06-01). "For People With Down Syndrome, Longer Life Has Complications". The New York Times. ISSN   0362-4331 . Retrieved 2020-04-19.
  3. Hennessey, David; Writer, Staff (2011-09-24). "State girl with Down syndrome to be featured in Times Square video". Connecticut Post. Retrieved 2020-04-19.
  4. "National Down Syndrome Society". GuideStar. Retrieved 2021-06-29.
  5. "Our Mission". National Down Syndrome Society. Retrieved 26 April 2023.
  6. "National Down Syndrome Society - Brochure" (PDF). 2016. Archived (PDF) from the original on 26 March 2020. Retrieved 26 April 2023.
  7. "Times Square Video Presentation". National Down Syndrome Society. Archived from the original on 30 March 2021.
  8. Holohan, Meghan (2 September 2020). "Woman details inequities of living with Down syndrome in popular TikTok video". Today. Archived from the original on 8 December 2022. Retrieved 26 April 2023.
  9. Norlian, Allison (4 January 2021). "A Woman with Down Syndrome Has Fought for Organ Transplant Anti-Discrimination Legislation for Years; Now, It's Been Proposed, and Named After Her". Forbes . Archived from the original on 26 April 2023. Retrieved 26 April 2023.
  10. Maslow, Nick (25 April 2023). "Barbie Debuts First Doll with Down Syndrome to 'Counter Social Stigma Through Play'". People Magazine. Retrieved 2023-04-26.
  11. 1 2 Vyse, Stuart (16 January 2019). "National Down Syndrome Society Promotes Communication Pseudoscience". Skeptical Inquirer. Committee for the Scientific Investigation of Claims of the Paranormal. Archived from the original on 17 January 2019. Retrieved 17 January 2019.